My daughter has lyme/babiosis and is being treated with flagyl. She's been taking it for about a month and a half. We are supposed to take 3 pills per day but can only tolerate two for now. She has no appetite and her stomache always hurts. Yesterday she started having some chest pains (which I thought was stomach related / gas) and I gave her some pepto and it seemed to help. Then she had really bad back pains.. This morning while getting ready for school, her hands starting shaking, she got dizzy and had shooting pains up her legs, arms and in her chest. This is really scary stuff. Has anyone else experienced this? I have a call into her LLMD this morning. I'm hoping its the medicine that's causing these symptoms. I also learned that she can not have any alcohol what's so ever and she was putting ear care on her ear last night because one of her holes seemed to be infected. I'm sure alcohol got into her system this way. Anyone have any suggestions, pleaswe help...
Posted by Shahbah (Member # 28735) on :
Oh yes, that's exactly how all my neuro symptoms started and for some reason I also feel it is directly related to my stomach so if I eat or drink anything that increases inflammation such as alcohol or any food that I am allergic to, then I am done... So what helps? if she food allergies, she must be very strict about her diet, avoid alcohol and coffee by all means... Magnesium, high does of sublingual B12 and avoid stress... Relaxing baths and breathing, drinking a lot of water all help... But this does not get rid of the wahtever underlying cause of all this... I think it has to do with infallamtion in the stomach and gas in the lining tissues... Keep us posted! Oh one more thing, any medication or supplement has to be taken with food, at least fr me, otherwise the inflammation response comes right away....
Posted by IckyTicky (Member # 21466) on :
My teenager had this as well. Severe chest pains and she would suddenly at the same time get weak and fall. It was very scary. She had EKG, ultrasound and heart monitor but nothing was found at all. She has gotten better and no longer gets this symptom. This was happening while she was on minocycline. It very well could have had to do with her diet, although at the time I wasn't thinking about that.
Posted by lauriemay1 (Member # 24153) on :
I just talked to her LLMD, he only suggested that we cut down on the flagyl to one pill per day. So is the Flagyl making her have these pains or is it the Babesia? I don't know if that's the right move to make. I really think he needs to change her med completely because to me her symptoms are getting worse not better. So either the Flagyl is not doing it's job or what? I'm very confused. She's been treated for lyme for an entire year now.. I would think by now I would see improvement, not the opposite. Any other stories you can share would be very helpful.
Posted by BackinStOlaf (Member # 23725) on :
Have you heard of a herx reaction. You feel worse while on medication from the die off of the toxins. This can actually be a good sign that it is working.
Posted by lauriemay1 (Member # 24153) on :
Yes, she has had many herxes before.... but she never felt chest pains and fell over on the floor before. That seems a bit much for a herx isn't it?
Posted by seibertneurolyme (Member # 6416) on :
I am a little confused about what meds your daughter is on. Is she taking the flagyl as part of her babesia treatment or as a cyst buster?
Flagyl can cause peripheral neuropathy as you probably already know.
It is hard to say from your descriptions if she is having nerve pain rather than actual heart pain.
Flagyl can also cause candida issues which could be the cause of any G.I. symptoms.
You should not drink alcohol while taking flagyl, but as far as I could determine when I researched this for hubby the main symptom would be very bad nausea.
Bea`Seibert
Posted by lauriemay1 (Member # 24153) on :
She is only taking flagyl daily right now. The LLMD is concentraining on the babesia at this point. She was treated for Lyme with other antibiotics over the past year. It may very well be nerve pain. She said that the pain goes up her leg and up her arm but stops in her chest. She takes her acidophilus every day to prevent candida. Flagyl is tough on the stomache.. she has no appetite from it. LLMD wanted to switch her meds to another but the meds cost $1000. My insurance didn't hit my deductible and I couldn't afford to switch just yet. I still wish that he would of switched it back to zith or doxy for now with something else like malarone/artesimin.. she handled these meds very well. But since she wasn't improving 100% he switched her to flagyl. She's been taking it for about a month and a half now and has been going downhill instead of uphill. Could this nerve pain be a herx reaction? Seems to be pretty intense. Her hands were going numb also.
Posted by TF (Member # 14183) on :
Any time you start a new med, you get worse. That is because the new med has a different killing profile from the previous meds.
In other words, the new med is killing germs that the previous meds could not kill.
So, you are to stay on the new med until this isn't happening anymore. That's how you know that it isn't killing any more.
However, you have to be familiar with the med's side effects in case some of the new symptoms are really intolerable side effects.
So, it sounds like your lyme doc is cutting back the dosage so that your daughter doesn't suffer so much but keeping her on the med since it is obviously still killing germs for her. She has only been on it for 6 weeks.
Sounds good to me.
You should see this pattern during her treatment. Any time you start a new med, the symptoms get worse or new symptoms emerge. Then, they slowly get better and better. Recovery from this illness is not a straight line. But, over the span of a year, you should definitely see a lot of improvement.
What you are describing certainly sounds like nerve pain, which can be sharp for a few seconds and make you fall over. So, it doesn't sound like it is anything serious (like a heart attack).
Posted by Razzle (Member # 30398) on :
Numbness in the hands may be caused by flagyl, and it can become permanent if the medication is not stopped. I would double check with the doctor specifically about the numbness in her hands.
Posted by lou (Member # 81) on :
I had to switch to tinidazole instead of flagyl, because of the peripheral neuropathy it caused. Tini is easier to tolerate, although still powerful.
Posted by lauriemay1 (Member # 24153) on :
Regarding Herxes - doesn't it maximize previous symptoms you have had with lyme? She's been on meds for over a year, has gone through many herxes..... but never had this kind of pain before. Today is day 3 of the pain and she can't get up for school. Her hands are numb and her head is like a migraine and she can't lift it up.
Posted by brownlymie (Member # 31032) on :
This seems to be a medication reaction. I get confused with the side effects of meds and herxing. But I dont think your daughter is herxing.
Posted by lauriemay1 (Member # 24153) on :
Yes, i'm very confused with this. I don't know if it's a medication reaction - people telling me that flagyl causes neuropathy - so that means it's not a herx..... I cut i down to one - but no improvement yet. I'm going to make an appt with the LLMD for this Sat. I can get better answers in person versus over the phone. He's very quick on the phone. I'm very worried about permanent nerve damage. She's bad in the morning but as the day progresses, she's much better but gets alot of dizziness. She does have neurological lyme.
Posted by steven (Member # 13101) on :
Be careful. Flagyl can be neurotoxic.
Posted by momlyme (Member # 27775) on :
Use the coca pulse test to differentiate between an allergic reaction and a die off.
You can google "coca pulse" or "coca pulse test" for an explaniation of how the test is done. It is as simple of taking your pulse.
You may even be able to do the pulse test without swallowing the medication. Try it with the medication in her hand held over her solar plexus.
our teenage son had this too. It was during one of his bad herxes. It is a very scary thing when it happens. I hope your LLMD can give you the answers you are searching for! Let us know what you find out on Saturday.
Posted by lauriemay1 (Member # 24153) on :