This is for the chronice lyme people that have neurolgical issues. What has helped you get better or helped in any way with the neuro problems? Posted by caat (Member # 2321) on :
I found plain asprin- NOT motrin or tylenol helped reduce meningitis and many neuro symptoms. Didn't find anything else that helped just the symptoms and not the infection. Lemon juice in water helped slightly with herxes.
I'm almost positive I got rid of lyme with rocephin/flagyl (1 month) followed by ceftin/tinidazole (1 month). This was after doing high dose doxy & occasional flagyl ( which kept meningitis at bay) for 4 years though. YMMV.
Then got rid of bartonella or something like it with rifampin/zith/doxy (4 or 5 months). THAT got rid of the meningitis.
Now working on a possible babesia infection.
Posted by HaplyCarlessdave (Member # 413) on :
quote:Originally posted by lrtbc: This is for the chronice lyme people that have neurolgical issues. What has helped you get better or helped in any way with the neuro problems?
The neuro issues are the hardest to deal with. They are the longest to linger, and can affect your resolve to get better; which is tremendouslky important.
All the things I tried have some potential side-effects. But since they are herbal, the side effects are probably more controllable.
Psylium Seed, powbered, 1 tsp stirred into a tall glass of water a couple times a day may have had a positive effect on my mental clarity and "lyme fog". I actually took it to help regulate the "runs" created by high doses of the antibiotics clarithromycin and amoxicillin. It makes sense that it would help with neuro issues, because, like cholestyramine, it prevents re-absorption of toxins by the colin.
Gingko biloba unquestionably helped. You have to take enough of it, though- I tried as much as two grams of the ground raw ground herb. It works well in tea, too. It has a blood thinning effect; how powerful, I am not sure., which could be a concern for some people. A brand called 'gingoba' (don't worry; I have no affiliation whatsoever...) seemed most consietent in its effect.
I fancied garlic helped with this (neuro issues), too, but that's purely "anecdotal"- I didn't consciously test it the way I did the others.
DaveS
Posted by canbravelyme (Member # 9785) on :
What a great thread!
Caat: I'm intruigued by the aspirin issue...I was told by a somewhat incompetent MD who fancies himself LL that I should stay away from aspirin, and only use ibuprofen, or tylenol. I believed him, but perhaps it's time to re-evaluate. Do you know what the deal is on aspirin, and why someone with lyme mightn't take it?
Also, I see you said Flagyl helped. I've found flagyl to help gangbusters with the symptoms. What is the take on neuro issues being targeted with Flagyl.
Garlic makes me herx like mad. I think there is definitely something to it - just have to watch how much.
More than anything else for me is drinking lots of water with lemon.
The burning sensation, I get some temporary relief from a product called Batherapy.
I would love to get some other ideas. Looking forward to hearing more.
Best,
Posted by kitkat32 (Member # 9682) on :
I htink flagyl has helped my neuro symptoms alot. Everything was pretty smooth sailing until I stopped taking all abx..a trial by LLMD..and I relapsed.
I am going to continue to take Zithromas and start Rocephrin next week. Hopefully this combo will help. After I finish the rocephrin it's back to flagyl.
My LLMD office said not to take flagyl along with the rocephin. I thought I would be taking them together since flagyl is a cyst buster. I guess I will have to talk to them about that.
Even though I still have some neuro problems I don't have stabbing/burning pains, migraines, any numb/tingly feeling anymore.
kit
Posted by sometimesdilly (Member # 9982) on :
the only things i've have found that consistently made any difference- and not super-dramatic- are drinking lots of water and taking high dose magnesium and Vitamin B's every single day.
a mix of mino and malarone seemed to help a great deal for about 2 weeks, but none of that progress was maintained, and for all i know waht seemed like progress was just a coincidentally quiet time for those pernicious Bb's et al.
i am paying a great deal of attention to this thread- thanks for asking the question...
dilly
Posted by canbravelyme (Member # 9785) on :
Dilly and others,
I've stopped taking Vitamin B entirely. I have a feeling that it aggravates my symptoms / I have too much of it. Is this possible? It seems counter everything we've been told, yet I have to listen to my body.
I did come back from a blood test with quite a high number on VitB-12, oddly enough...
With best wishes,
Posted by Searching4Answers (Member # 11079) on :
BIAXIN for neuro symptoms! My miracle drug.
Posted by ByronSBell 2007 (Member # 11496) on :
I have found nothing to work for my neuro symptoms... I have tried just about everything in the book and I still have a chronic headache!
Posted by sometimesdilly (Member # 9982) on :
CBL-
teh absolute bottom line for me with this now is to trust my own body. period. even before i tust my llmd. you are the world expert on you.
the limitation in sharing notes like this is precisely that what works for one mightnot work for another, or it might, but maybe not for another 6 months. you know?
the way i know i need vitamin B is that i stop being able to remember my dreams. i have been aware of that connection, in my case anyway, for many years before having Lyme.
so maybe i was predisposed to not having enough B and you weren't, or you even trend towards having an abundance?
don't know. but for sure- trust yourself!!!!!
dilly
Posted by hiker53 (Member # 6046) on :
My neuro dcotor also suggested aspirin, because he says it helps his MS patients. It did not seem to help me, though. Hiker
Posted by canbravelyme (Member # 9785) on :
I appreciate the confirmation, Dilly. It's easy to get caught up in "should", so I feel a little question mark each day when I pass by my vitamin B...I'm going to trust myself with more confidence. In practice, I listen to myself, despite doubt.
As far as aspirin goes, I'm going to ask my LLMD next time I see him.
With best wishes for the continued thread of interest,
Posted by pattilynn (Member # 8065) on :
Canbravelyme,
I found vitamin B6 made my numbness and tingling worse. I've tried to take B complex several times and noticed worsening.
I recently went to a new neuro and he checked my B6 levels. My level was very toxic. All I was taking was a multivitamin. The test was done fasting so I hadn't had a vitamin for 24 hours.
High levels of B6 cause neuropathy, numbness and tingling. I looked it up. It said the symptoms can take 2 to 3 years to resolve.
Patti
Posted by canbravelyme (Member # 9785) on :
Oh my gosh, Patti. I'm going to get that checked out. You see, you always "know"...
Did the doctor say there was anything you could do to expedite the B Vitamin overload? Just wait it out?
Meantime, I'm listening carefully, and staying away from the B's...
Eesh! Posted by Boomerang (Member # 7979) on :
Gosh, how can we ever win? Hubby has been on B for quite awhile. He also ordered Vitamin B when he first started thinking he was losing his mind.
Now, we find out, the B vitamins are bad? It's enough to make you scream.
Are we all guinea pigs with this? Just makes me so mad.
Thanks for the info.
Edited to add, hubby took Ibuprofen about 15 years ago, and had anphalytic shock (sp?)...and had to rush to the hospital. He's also had bad reactions to aspirin in the past. Now I'm wondering about that.
Just added that for those who know more.
Posted by pattilynn (Member # 8065) on :
I don't think the B's are bad for everyone. B 6 is water soluable so for "normal" people, the body should just get rid of what is not needed.
I have a follow-up with the neuro on Tues. so I will ask him what he thinks. I googled "vitamin B 6 toxicity" when I looked it up. His office called with the toxic result.
I was told to stop my multivitamin and that he will repeat the test in a few weeks. Even before I had all these horrible neuro problems I found I could not tolerate B complex for more than a few days. I would get tingling in my legs.
He did tell me that it is a recent finding that B6 can be associated with neuropathy but usually it's low levels.
Boomerang,
The anaphylactic shock was probably just an allergy to ibuprofen. Many people who are allergic to ibuprofen have cross reactions to aspirin as well. It even says it on the bottle. I know in the hopital we never would give ibuprofen to people with aspirin allergies due to the risk of an allergic reaction.
Patti
Posted by Cass A (Member # 11134) on :
UP!
This topic is of major interest to me at this time, and I would love to get more input on it!
Best,
Cass A
Posted by 5dana8 (Member # 7935) on :
6 months IV abx & then 3 years on orals.
That includes treating co-infections & yeast as well as my lyme
Do a search here . There is a ton of good information on neuro lyme
Posted by EyeBob (Member # 12572) on :
up
bt
Posted by CaliforniaLyme (Member # 7136) on :
IV Rocephin!!!
And only IV Rocepihn touched them- orals didn't do squat!
Posted by lymeabean (Member # 11657) on :
quote:Originally posted by lrtbc: This is for the chronice lyme people that have neurolgical issues. What has helped you get better or helped in any way with the neuro problems?
Hi there,
I made the most gains on IV immunoglobulin! I'm functioning again driving and all after having been bedridden with nursing care around the clock from the neuro symptoms of lyme. -Dawn
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