posted
Have some intense nerve pain in my toes. I would give anything for this to stop. I dont think the ER would even know what to do. I'm thinking very desperate thoughts. I see my lyme doc mon. (12/5)
But of the things I will list, or anything else you can think of, what could be causing this? It's all I can think of that's different (other than the lyme/infections themselves)
Tea I’m drinking (cinnamon, ginger, hibiscus, apple flavor, natural flavors, chamomile, roasted chicory, orange peel) Soy Lecithin (tho Ive been ingesting that for years.
Candida Candida treatment – die off Lyme or infections Curcumin capsules Activated charcoal 1.5 hrs after eating at night
And what else could I do to help it? I've also had an increase in electrical feelings.
And some background...
I've been to a neurologist in the past, starting many years ago, and was seen this year. They found nothing.
Also had the nerve conduction tests in my arm and leg (didnt last the whole leg one, and they did one arm)--from the results they got, all was normal.
I used to be on Gabapentin for "fibromyalgia"--more specifically bone pain-- b4 Lyme was even a thought. When I went up a bit in dose, I seemed to get shocky sensations.
I went on Lyrica a really short time b/c I was scared of it. So I dunno if the gaba caused stuff too.
The nerve PAIN is new as of this year. In june I was on 50 of B6 and thought it might have been toxicity from that. Stopped and seemed to go away. Till now.
I've had it milder the past month or 2 (before starting candida treamtent) and was put on Pinella. Been on that ever since.
I'm on one drop of Banderol already. Started Candida treatment 10/13. I was on Diflucan and Nystatin.
Now just Nystatin since Dif was just 10 days. 4 pills of Nystatin, down to 3 b/c I had lots of bone and muscle pain, thought may be due to that. Still get that pain, not as much.
I'm not on any abx.
(breaking up the post for easier reading for many here)
[ 11-30-2016, 11:44 PM: Message edited by: Robin123 ]
Posts: 606 | From sw suburbs of chicago, Illinois | Registered: Mar 2016
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Jordana
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posted
Benfotiamine Aspirin ( for pain, inflammation, also circulation) Magnesium footbath
Any kind of footbath with minerals and poss essential oils; there's one called helichrysum that helps some people.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
I read the first one is folate? I'm on a methylated form of folate now, due to mthfr, a very low dose. Been on that since about May 2016. I'm not sure if I can take asprin or not. I can try epsom salts?
Posts: 606 | From sw suburbs of chicago, Illinois | Registered: Mar 2016
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posted
I have nerve foot (and shoulder..same side) pain as well, its a really tough nut to crack. I also have a peripheral neuropathy (presumably associated with Lyme infection) and I've always assumed they all go hand in hand.
When the infection cleared up my feet were considerably better.
I suggest an anti-inflammatory (like Voltaren), and if worse comes to worse, ICE. This kind of pain can make you feel crazy. Try and remember it will pass. Mine at least comes and goes (although never completely).
If you have a very active infection it may not settle until you aggressively (antibiotics) resolve:(
I hope you feel better, don't let it make you crazy, try and remember it will likely pass (one way or another).
(breaking up the post for easier reading for many here)
posted
I'm not on any abx, just the banderol. It doesn't seem like a "common' symptom, from what I hear and see ppl saying. I can't tell if it is the infections, or the candida or something else.
Thanks Lila. I just dunno why all the sudden its worse? It was milder for a couple months, but I didnt expect it to come back totally Guess b6 is not the only reason. Or maybe that was coincidence.
And as far as B6, I did look up foods high in it. I do eat raw spinach, dark meat (usually) and bananas. Dark meat has less, raw spinach has less than cooked.
The highest amount there is around .69 mg for a cup. And I was on 50 mg. The requirement is only 2 mg. I wouldn't *think* foods, as long as you dont eat a ton of them in a day, would contribute much. 2 mg is much less than 50.
I do eat nuts (cashews, almonds, pecans). Pistachios are I think the highest in b6 so I dont eat them.
(breaking up the post for easier reading for many here)
[ 11-30-2016, 11:45 PM: Message edited by: Robin123 ]
Posts: 606 | From sw suburbs of chicago, Illinois | Registered: Mar 2016
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TF
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posted
If the pain got bad when the weather turned cold, then that is likely the cause.
Lyme causes inflammation, so you may want to do everything you can to stop inflammation.
People with arthritis hate cold weather because it sets off their arthritis--inflammation.
When I had lyme and didn't know it, I got horrendous nerve pain traveling down my jawbone. Finally, my dentist sent me to a dental surgeon who diagnosed me with "inflammation."
It was winter time. He said the pain probably would not go away until the warm weather came. So, he put me on the maximum dose of advil (an anti-inflammatory) plus I had to take narcotic pain pills as well.
I noticed that cold and wet days the pain was the worst. It finally did go away when the weather got warm.
So, if your pain seems to go along with cold temps and wet weather, you can eat an anti-inflammation diet, take anti-inflammatories, and take narcotic pain meds.
The book "The Lyme Disease Solution" has an anti-inflammation diet in it. There are also supplements that are anti-inflammatory. The lyme doc who wrote the book told one of his patients that the diet and supplements can get rid of 1/3 of a patient's lyme symptoms (because they are caused by inflammation).
I hope this helps you greatly.
I took the Advil until my stomach would not accept it anymore. Other anti-inflammatory meds that are good include Celebrex. Need a prescription for that, of course.
And, turmeric is a good anti-inflammatory (or curcumin, its active ingredient).
There is a great doctor in my area who sells an anti-inflammatory supplement that did a great job for my friend who was diagnosed with rheumatoid arthritis.
Her hands swelled up like balloons, and she said the pain level was off the charts. But, she went to him and bought this supplement that he recommended and it worked. I saw the ingredients and it was about 14 different herbs.
So, if you know of such a doc with a very good reputation, you may be able to buy a great anti-inflammatory supplement from him. Try it for 30 days. If it is going to help you, that should be a long enough trial.
Lyme is so inflammatory. That same book names the 14 herbs to take for inflammation starting on page 305 of the book.
Here is a quote for you:
"Chronic inflammation is directly related to the severity of symptoms that Lyme patients experience. The fact is that the greater the amount of chronic inflammation, the greater the severity of symptoms." (p. 302)
He says it is essential to get inflammation under control.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Phoiph
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6Hypnone...
You might want to get checked for B-12 deficiency, as it can cause the neurological symptoms you describe.
You should ask for an Active B-12 test, as a Total B-12 test will only give you a reading of what is circulating in the blood, not what is being absorbed into the tissues, which can be misleading.
Folate supplementation can also mask and worsen a B-12 deficiency.
posted
I haven't really noticed hot or cold differences. This first happened in June, now its in Nov.
I've heard so many bad things about nsaids that I'm scared to take too many of them. I do take tumeric (Meriva-SF by thorne). I mostly have proteins, fruits and veggies, and many nuts. Dark choc too.
I dont doubt about the inflammation. I called my doc and (shes seeing me mon) but wont give any suggestions for pain for now. I couldn't believe it.
Posts: 606 | From sw suburbs of chicago, Illinois | Registered: Mar 2016
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posted
Just a guess on this one - taking turmeric really reduces pain for me in joints and tissues - it's very anti-inflammatory. I get it in bulk at the health food store and dip 00-size capsules into it and take a couple a day. No idea whether it might take down pain for you.
Posts: 13116 | From San Francisco | Registered: May 2006
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Well my vit B12 is high, has been for a few years that I know of. My lyme doc said its just circulating tho, and doesn't mean my body is using it. So she put me on a dissolving B12 (Perque Hyrdroxy-2000; I take it every other day). I think she's basing that on my genetic results partly. I also have MTHFR.
The test I'm looking at now just says b12 (not total or anything) and it's 1345 (w/the top of the range being 700). On the same test, Methylmalonic acid was tested, that was 127. Both those are higher than the previous time I had the test. I'm on a very low dose of methylfolate (250)
Yep. Saw that same article.
I actually do take Tumeric. Started that 11/2, at 500. I can't really tell if it's helping the bone and muscle pain (why I initially started it, w/the thought that that pain was due to the Candida treatment) I think maybe a little. Not nerve tho.
Posts: 606 | From sw suburbs of chicago, Illinois | Registered: Mar 2016
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Catgirl
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posted
I agree with Lymetoo (oxalates). I just cut out one thing that I took all the time and it made me feel better. You might swap out the spinach for something else.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Phoiph
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posted
MMA result of 127 seems very high. What was the reference range on your test?
Did you also have your homocysteine tested?
Posts: 1886 | From Earth | Registered: Jul 2013
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posted
I have spinach in my protein shake. But only about every 3-4 days. The other days I have arugula. And nuts are the most calorie dense food w/protein I can have, since I can barely eat anything else w/all the **** I cannot have. Take that out and I'll weigh 80 lbs. You can only take out so much food before you die. It's GOT to end somewhere.
No, 127 is a really good number. Range: 79-376
Posts: 606 | From sw suburbs of chicago, Illinois | Registered: Mar 2016
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posted
The nerve pain that you have sounds like small fiber neuropathy. This can not be"seen" with an EMG/NCS. Many doctors give the label of fibromyalgia when really you have small fiber neuropathy.
Posts: 30 | From Wisconsin | Registered: Sep 2016
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posted
No matter what the symptoms are, seems like if it's nerves, its from the lyme infection, which improves w/treatment. Unlike this doc is saying. And I've had the emg/ncs, and the tuning fork, pin prick test numerous times. All negative.
Posts: 606 | From sw suburbs of chicago, Illinois | Registered: Mar 2016
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Phoiph
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posted
6Hypnone...
I had severe, constant, head to toe burning neuropathy for 8 years. I paced day and night, as it would intensify whenever I stopped.
The ONLY thing that finally worked (and also made me well and gave me my life back) was mild hyperbaric (using a home chamber). Please keep it in mind, as I know the desperation this kind of pain can cause.
mHBOT is the only treatment known to promote regeneration of nerve cells and release of stem cells (plus much, much more).
You can read more on the mild hyperbaric thread, or PM me if you like.
Posts: 1886 | From Earth | Registered: Jul 2013
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posted
Small fiber neuropathy doesn't always improve with Lyme treatment. It's immune-mediated in nature and it depends on what was damaged in your spine (dorsal root ganglia). The people that have improved have taken IVIG and/or HBOT.
Posts: 30 | From Wisconsin | Registered: Sep 2016
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posted
Hi,madisongrrl, Never heard of small fiber neuropathy, must be what I have. Mine did not show up on tests they just said pain must be from lyme. Thanks.
Gaba should help not hurt what is usually given for it.
I also will not take Lyrica told not to by some specialist. Neurologist who did nerve tests was insisting it is great. Hmmmmm?
Huggggssss, to all in need.
Posts: 746 | From Clearwater/fl/Pinellas | Registered: Jun 2003
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quote:Originally posted by Kerryblue: Hi,madisongrrl, Never heard of small fiber neuropathy, must be what I have. Mine did not show up on tests they just said pain must be from lyme. Thanks.
Gaba should help not hurt what is usually given for it.
I also will not take Lyrica told not to by some specialist. Neurologist who did nerve tests was insisting it is great. Hmmmmm?
Huggggssss, to all in need.
Small fiber neuropathy can only be seen via punch biopsy. However just because you have a negative punch biopsy doesn't mean you don't have small fiber neuropathy. Neuropathy can be patchy and the biopsy can miss it, especially for those of us with Lyme who get abnormal presentions with face and/trunk burning.
Posts: 30 | From Wisconsin | Registered: Sep 2016
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posted
I'll bring it up to my doc. I also feel shocky or electricals on my knee, elbow... seems like anywhere. I dont know my nerves are actually damaged and haven't started any abx anyway. I'm also broke as f*.
Posts: 606 | From sw suburbs of chicago, Illinois | Registered: Mar 2016
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posted
For the nerve stuff, they upped my Yucca, and considering medical pot as a tincture. They think it may be the Lyme, or even the Candida. So they added Samento. I am to up a drop every 6 doses. Also upping the Banderol. Also want to do a Igenex on me. They said if I'm sweating normally all over, I likely don't have SFN.
Posts: 606 | From sw suburbs of chicago, Illinois | Registered: Mar 2016
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Rumigirl
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posted
quote:Originally posted by 6Hypnone: For the nerve stuff, they upped my Yucca, and considering medical pot as a tincture. They think it may be the Lyme, or even the Candida. So they added Samento. I am to up a drop every 6 doses. Also upping the Banderol. Also want to do a Igenex on me. They said if I'm sweating normally all over, I likely don't have SFN.
Who is "they," neurologists? That's ridiculous! Yes, SFN can create problems with sweating, but it certainly doesn't rule it out! A lot of people with Lyme have it, whether they know it or not.
IVIG can help with it, if you qualify, but only if you are receiving good treatment for the infections. Is there a reason that you aren't taking antibiotics? Can you not tolerate them?
I know, I know, who loves to have to take them? However . . . they work the best for Tick-Borne Diseases, as long as you can tolerate them, and you take plenty of top-quality probiotics, plus Nystatin with the abx.
Posts: 3771 | From around | Registered: Mar 2008
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posted
My guess is the activated charcoal is depleting minerals, and it relates to either calcium or magnesium deficiency, or both. One of the LLMDs (can't remember which) warned against taking minerals orally though b/c of biofilms -- but you can take these subcutaneously.
Posts: 30 | From Massachusetts | Registered: Jan 2017
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posted
This is kinda a weird idea, but it gave me relief. When I had some pain in my hand once, a pain doctor suggested wrapping it in a lidocaine 5% patch -
it's an Rx and they come something like 20 or so in a box, like 4x5 inches. I applied them to my hand, and it actually made the nerve pain more bearable.
I believe in getting creative if it works. So here's the silly idea for you - to wrap your toes in the patches - they're sticky so will adhere. And wear some shoes of course to keep them on your feet.
Just an idea - it helped me with my hand.
Posts: 13116 | From San Francisco | Registered: May 2006
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Bartenderbonnie
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Member # 49177
posted
Robin123, I also use patches. They really help.
And if you can't get to the doctors office, or if you don't want to deal with a doctor in order to get a script,
most pharmacies sell the lidocaine patches over the counter.
They are 4% instead of 5% lidocaine. And you can apply up to 3 patches at a time.
Anything to get rid of the PAIN .
Posts: 2977 | From Florida | Registered: Nov 2016
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posted
In no case can you independently engage in treatment. It is necessary to visit a doctor and pass tests for compatibility with the components of different drugs. I was in a similar situation and I can say with confidence that it is impossible to live like this. I was depressed, and everything seemed so heavy and difficult because of the frequent headaches.
posted
How do you tell what your nerve damage is from? B12? Lyme? Bart? CRPS? What if it spreads all over? Is that CRPS? Small Fiber Neur? Have other symptoms also but this is the worst.
Posts: 509 | From southern new jersey | Registered: May 2003
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Rumigirl
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posted
Marie,
Since you've been having these bad symptoms for a while, in my experience you need to see the best LLMD you can find. Along with that, a LL neurologist would be ideal. Please don't wait any longer, if you don't act, some of the nerve damage can become permanent.
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Guess b6 is not the only reason. Or maybe that was coincidence. 
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