I did IV Rocephin for 3 months, Pencilliin VK for 3 weeks...until it started killing my stomach. It has brouht the neuopathy down to a level 6 as opposed to 10. Now I am only on zith 250 and Mepron. I am waiting to find out what my next drug will be. I am so disgusted and scared..... Nothing makes this pain go away and I am so sick of crying!
Posted by viva (Member # 8183) on :
Monica,
I'm so sorry that you're having to deal with this. I know from my husband's struggle how frusrating and uncomfortable the neuropathy can be.
Here is one suggestion, and of course, I'm not a doctor. When my husband was going through chemo for colon cancer, one of the drugs caused increased neuropathy on top of what he already had from Lyme. I did some research, and found that acetyl-l-carnitine, 1000 g. 3x/day, has been used to combat neuropathy caused by diabetes, as well as cancer tx.
My husband starting taking it at this dose (2 500-mg pills, 3 times a day). He found that it stopped the progression of the additional neuropathy.
So, it might be something to run by your LLMD.
Hope others will be along soon with more ideas.
With best wishes for relief soon, Viva
Posted by mtree (Member # 14305) on :
hi monica,
i was put on lyrica.....at bedtime to help me sleep..... 100mg.....
it has helped with sleep and pain......
i hope you get relief soon....
ask your doctor about that...they use it on diabetes patients.....
mtree
Posted by Monica922 (Member # 13496) on :
I did just find out he is going to try a low dose of Doxy 200 a day and build it up slowly. I am not sure how that impacts the zith and mepron? I am turning into a clincial test monkey..LOL.
Posted by yanivnaced (Member # 13212) on :
Have you tried the whole lemon and lecithin drink?
Apparently AIDS patients get neuropathy relief from it.
Might be BS but it seems totally safe and wouldn't hurt to try?! (remember to use organic lemons since you'll have to blend the entire fruit).
Neuropathy is one of the hardest symptoms to get rid of in my experience. Don't torture yourself and have your doctor prescribe a tricyclic or lyrica for the pain, it really helped me. It most likely won't remove all your pain, so you'll still be able to monitor progress.
Also, start supplementing alpha lipoic acid, acetyl-l-carnitine, B12 injections/B complex, EPA/DHA/GLA fatty acids and magnesium citrate if you aren't already. I have seen obvious improvement since starting these supplements. Alpha lipoic acid is used in Europe to treat neuropathy.
Posted by charlie (Member # 25) on :
my neuropathy was excruciatingly painful burning feet.
What helped was: Questran for detox, ultram(tramadol), neurontin, and babs treatment which included bactrim, these in no particular order...the ultram and neurontin were only for symptom relief.
tinidazole worsened my neuropathy considerably.
Charlie
Posted by sparkle7 (Member # 10397) on :
I tried a neuro supplement with alpha lipoic acid, acetyl-l-carnitine, phosphytital choline, etc. & it made me herx alot (meaning really bad pain). I heard that alpha lipoic acid can cross the blood brain barrier & cause the brain to detox. It may be really good but it can cause a worsening of symptoms. Start with a low dose & work it up.
My doctor suggested low dose Cymbalta for neuropathy. I tried it & it did help alittle. I'm not sure if I want to get into taking an anti-depressant. I'm still deciding if I want to continue. I've read some people experience weight gain from Lyrica.
I found that oxycontin & vicodin seem to help the most as far as drugs go.
I also discovered that cold may actually help. I was going to a place that has a hot tubs & cold tubs & I found that the cold ones really helped with the pain. I'm not sure if this is known or if it can lead to other problems but it sure seemed to help me. I alternated the hot & cold. The place I go to has 4 tubs with different temperatures of water. They also have steam & about 5 different kinds of saunas. I was really in bad pain & the cold water really relieved it!
Posted by Monica922 (Member # 13496) on :
Thanks for the ideas so far. I will try anything now I started the doxy today so I hope it helps too. I guess I will herx off this lovely drug too.
Posted by CamB (Member # 14999) on :
sparkle,
you bring an idea up that i hadn't thought of before.
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detoxing for neuro symptoms is probably so much harder because of the blood brain barrier. i knew my mother was almost impossible to detox and now this makes some sense. have you found this to be true as well?
thanks for the idea about the alpha lipoic acid -- any other brain/neuro detox ideas?
Posted by savebabe (Member # 9847) on :
Levaquin helped reduce my neuropathy in my feet and hands by 80%.
Bart seems to really hit the CNS, more than the other TBD's.
Feel better.
Posted by cantgiveupyet (Member # 8165) on :
Neurontin has helped me the most with the nerve pain i have in my bladder(interstitial cystitis)
i was against it at first, but it has helped.
Posted by sparkle7 (Member # 10397) on :
CamB- I think it's important to try to get more detailed info about herxing in relation to Lyme.
I think we go through different types of herxes - it's not one size fits all.
I took a supplement from Jarrow called Neuro Optimizer & was in so much pain I didn't know what to do. I just took the regular dose for a few days. I don't think it was anything else since I'm pretty familiar with how all my other supplements effect me. This one was a new one that I started.
In a sense, it may be a good thing. I just really don't know. I posted a thread about herxing but didn't get too many replies. I definitely think people herx differently from different things. I'm not sure if it means we are getting better, though.
I don't know if people have "neuro" herxes as opposed to other kinds of herxes. It's REALLY important since all other diagnostic tools are inaccurate to know if we are actually getting rid of Lyme. Herxing is all we have to guage whether we are getting better. If we don't know what it actually means - nothing makes sense.
I have my doubts about antibiotics - that's why I stopped taking then. It's a personal thing & I wouldn't necessarily recommend that to others.
If Lyme produces a neurotoxin when it dies - how can we stop it from effecting our nerves? Who knows if all the spirochetes are dead but the neurotoxin has damaged our nerves? Maybe we are just suffering from nerve damage. We don't know if we still have spirochetes or if they transformed into something else. If there are no conclusive tests - how can we know what is going on?
I just figured that I'd start trying stuff that will detox the nerves. Boy, did I have a reaction! Maybe the spirochetes are in my nerves? I'm no scientist but my back is in very bad pain. It's hard to know what's going on unless you experiment.
If anyone has any further info on this - I'd like to know. Nerve pain really sucks.
Posted by luvs2ride (Member # 8090) on :
I did a quick search and came up with the following site information.
It talks about a rare toxic side effect from medications that can cause neuropathy.
That made me think you could be toxic from so many things and your body's ability to detox is compromised.
If so, the medication you take is just adding to your toxic load.
Some of the supplements people are listing for you that helped them are actually chelating susbstances.
Please talk to your LLMD about detoxing.
Detoxing should not be attempted alone. Moving toxins around in your body causes significant pain and damage.
If your doctor is not well versed in this area, find a doctor who is and work with both doctors.
Detoxing takes time but may reduce your pain significantly and speed your healing time.
Toxicity is not rare, it is common. Especially if you are on a lot of medications.
Posted by JENNJENN (Member # 11952) on :
I ALSO HAD ALOT OF BRAIN PROBLEMS.... I HAVE BEEN TAKING ACETYL-L-CARNITINE!!!! BUT I TAKE 1200MG A DAY. IT IS WORKING!
Posted by CamB (Member # 14999) on :
sparkle,
my mother took abx for 8 months and quit as well. her herxes just raged and raged. I wonder if it was related to this brain-barrier detox issue we're touching on. epsom baths, drinking gallons of water, gluten-free diet, coffee enemas, sauna -- no traditional detox ideas like that lessened her herxes.
this is a good thread. neuropathy symptoms are excruciating so it's great to hear ideas for how to possibly take the edge off
Posted by amkdiaries (Member # 7035) on :
I believe that the neurotoxins are responsible for the excrutiating neuropathy that goes with this disease. I tried IV glutathione several months ago and within two minutes of taking it the neuropathy in my feet felt like I was walking on fire.
I stopped the glutathione because no one could tell me why it was happening and if it was a good thing or not. Cholestyramine which also binds to neurotoxins also made the neuropathy worse so I think there is some truth to the theory that neurotoxins are to blame for this horrible pain.
People that have a hard time detoxing these toxins suffer even more.
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mtree