posted
I'm not on Flagyl, but am on Tindamax, which is a related drug, so I'm not sure if you are interested in my info or not, but here goes....
I have neuro Lyme, while I have joint, tendon and widespread musculoskeletal pain, I don't have any swelling of any joints and I do think my primary problem is neuro.
1) So far, (I'm in the beginning stages of treating with Tindamax but have been on IV Rocephin for some time) my neuro symptoms have increased most definitely. They mostly include numbness and paresthesias. I've also noticed here lately an increase in eye pain, which I've wondered if it is optic neuritis...something to ask the doc.
-------------------- Susan Posts: 80 | From Queen Creek, AZ | Registered: Nov 2007
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posted
My issues are primarily neuro. Flagyl and Tindamax both clear my brain fog completely. I am mentally sharp until a week off off of them and I become slow and hazey again.
I believe the theory that they clear the cysts that are causing swelling in the brain. I cannot use them monotherapy though or other symptoms come raging in. Bicillin and Flagyl together keep my close to 100% indefinitely. Problem is I don't want cancer and have to take breaks from Flagyl every couple weeks. I slowly lose mental function until I restart.
Posts: 410 | From Victoria BC, Canada | Registered: Jul 2008
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MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
My issues are also primarily neuro. I am on IV antibiotics plus alternating tindamax and alinia. Overall the protocol is helping my neuro issues, no flaring from tindamax that I have noticed.
Only thing I noticed with the alternating is that tindamax seems to cause tingly legs when they are elevated and alinia seems to cause dry skin.
Posts: 1927 | From se usa | Registered: Mar 2010
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desertlily, Those are the symptoms I'm getting with Flagyl. The black box warning on Flagyl states that numbness and paresthesias are serious and med should be discontinued and doctor consulted if this happens. I had read that Tindamax had less side-effects than Flagyl, but apparently they both can cause peripheral neuropathy (sometimes irreversible).
migs, what kinds of symptoms rage when you use Flagyl alone without Bicillin? Do you have any neur symptoms? Worse while on Flagyl?
MichaelTampa, how is the Tindamax helping your neuro issues? Less nerve pain or ?
I'm going to put this back up and hopefully get more responses.
Posts: 277 | From Pennsylvania | Registered: Apr 2010
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Haley
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Member # 22008
posted
I used Flagyl for 2 weeks as my doctor said it causes permanent neuropathy in a large percentage of people. I was getting lots of tingles. He told me to restart in a couple of months. He doesn't like the stuff.
I know that I need to do a cyst buster. I will probably try Tindi next time and pulse it.
Posts: 2232 | From USA | Registered: Aug 2009
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
I am on Flagyl 500 mg 2x/day. I had one episode of neuropathy when I forgot my morning dose, so I took it at lunch and dinner. Tingling in my hand lasted for maybe 1 hour. No problems if doses are at least 8 hours apart.
My symptoms are all neurological. No joint or muscle pain.
Both Flagyl and Tindamax cause headaches and depression, but anything I take causes depression. It comes and goes with herxing.
I've had high tolerance for antibiotics/antifungals/antimalarials...you name it, I can take it.
I was infected 20 years ago. Positive for Lyme/Bart/Babs.
posted
Haley, I restarted, and the second time was even worse. Been off for at least 10 days and still having picking in feet. Taking a lower dose and trying to build tolerance did not work. BoxerMom, lucky you! JOLA, Did your neuropathy clear up? Tindamax is in the same family as Flagyl, so the warnings are the same, and RX said if you reacted to Flagyl, you should not take Tindamax, so I guess we are out of luck. What about systemic enzymes? Grapefruit extract (Pam mentions this in her book, "Cure Unknown.") Anyone know if it's really effective?
Based on the responses to this poll so far, there doesn't seem to be a higher Flagyl risk for neuropathy in people with pre-existing neurological problems than in those without. Seems to be a sensitivity issue.
Could use a dozen more responses, though, so I'm going to keep putting this UP.
Posts: 277 | From Pennsylvania | Registered: Apr 2010
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posted
Anyone else with pre-existing neuro problems made worse by Flagyl? If so, did you recover after discontinuing the Flagyl, or are you still having the med-related issues (or exacerbation of your neuro problems)?
Posts: 277 | From Pennsylvania | Registered: Apr 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I had neuro lyme. Took flagyl for 60 days straight with no problem.
But I was on high dose amoxicillin for 2 years prior to taking the flagyl. Maybe that made a difference?
Posts: 9931 | From Maryland | Registered: Dec 2007
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Did the amoxicillin do anything positive for your neuro symptoms? Had you seen reversal or healing of nerve problems before beginning the flagyl?
Posts: 277 | From Pennsylvania | Registered: Apr 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Yes, the amoxi helped me. But, I still got a new neuro symptom while on it--trigeminal neuralgia. It was unbearable.
So, Burrascano said that meant the disease was continuing to progress.
Once the flagyl was added, the lyme was stopped in its tracks. Got rid of trigeminal neuralgia and all remaining neuro symptoms.
Then, moved on and treated bart and babs.
Then, I was done. That was 5 years ago.
Posts: 9931 | From Maryland | Registered: Dec 2007
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Thank you TF. I WISH I could take the Flagyl without neuro side-effects. I've been off for almost 2 weeks and this time the symptoms have not totally resolved.
BoxerMom, how much GSI do you use and what brand?
Posts: 277 | From Pennsylvania | Registered: Apr 2010
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posted
Although Flagyl/Tindamax clear my haze, I have to say that when I was really sick, the first couple of days of Flagyl would create a horrendous herx reaction including some neuro stuff...
Hard to explain but within a day or two, my head would immediately feel lighter and I had more energy but I would have what my Doc called "near-term" memory loss....I would start a sentence and forget what I was saying before I got to the end. I could not hold a conversation but I felt better. After a couple days, I would just feel better and could speak in full sentences again...sometimes I could even be articulate about something.
Posts: 410 | From Victoria BC, Canada | Registered: Jul 2008
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
I had no issues with flagyl (just soreness, aches, typical die-off symptoms)
But my LLMD oly put me on like 500mg/day of flagyl
I weight 150 lbs... but am thinking of trying 750-1000 next time
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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