posted
I've had an increase in nerve pain frequency as of today. Was wondering if anyone had ideas as to why.
Things I've changed recently.. I've upped my curcumin maybe 2 weeks ago, started NAC April 7 last 2 weeks after my infrared sauna, I get ultrasound over my liver for extra detox. I've been doing candibactin br every other day for about 1.5 weeks for sibo. I'm increasing slowly. And I've been using a saline nasal spray with xylitol and grapefruit seed extract for about 3 weeks.
I'm Also in the process of getting mold evaluated in the house I'm At. My doc thinks I'm not improving in general bc I haven't addressed mold yet.
My anxiety, due to this particular type of pain, is ridiculous. That it's so often now, I feel really on the verge of losing it. I feel so alone and stuck.
Posts: 606 | From sw suburbs of chicago, Illinois | Registered: Mar 2016
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posted
I’ve had steadily increasing nerve pain since January 2018.
I tried all sorts of diets.
I take gabapentin and r lipoid acid and NAC. Nothing seems to help.
Nerve pain can have many causes, if you have small fiber neuropathy, then it’s damage to the small nerve fibers. This is something diabetics get in their feet, it starts as pins and needles and numbness.
To treat it you have to remove whatever caused the damage...could be a toxin (chemo can cause it)...could he Lyme, maybe mold toxins.
Mine isn’t going away so I’m wondering if it has progressed to autoimmune damage. It can be scary and painful.
Posts: 133 | From North Shore | Registered: Sep 2015
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posted
I've not been tested fir sfn bc I can't find a damn doc that can do it. But I don't get much numbness... Well none except under 1 toe. And same spot pins but only if pressed. I still am addressing mold. Have to have the house tested.
Posts: 606 | From sw suburbs of chicago, Illinois | Registered: Mar 2016
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posted
I think my small fiber neuropathy was caused by mold. Has there been a lot of rain lately? Are you eating food that has a tendency to be moldy, like peanuts or wheat products?
Posts: 142 | From Midwest | Registered: Sep 2015
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Oh, I don't know, but it could be a herx.
The only way to know is to wait and see. If you feel much worse, it means worsening of the disease.
If you feel somewhat better despite nerve pain (like a bit more energy, more movable joints/ where nerves were in pain), stuff like that, it means, to my view, a herx.
My herxes almost always came with pain. Specially you mention NAC and ultrasound in liver (the liver specially has MANY pathogens and toxins, so things could be a bit stirred up).
anxiety for me too, could be more infections (mold as you mention, or allergies) or it could be simply the effect of die off (toxins on the move).
Are you on binders?
One thing that helped me recently with anxiety (after eating a bad meal with pork, milk, gluten, sugar, I mean, everything I could not eat), was heat therapies: sauna, foot baths (very hot) and particularly hot bottles on liver, spleen, uterus/ovaries, thyroid and kidneys (adrenals).
I sort of did that mimicking a hyperthermia session (but done at home, with even higher temperatures...). It knocked me down for days, but I felt the anxiety fell to zero (that is why I can feel knocked down and sleep so deep, and wake up feeling myself again)....
Posts: 6199 | From Brussels | Registered: Oct 2007
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posted
Well it's on and off. In terms of worse. And usually what gets worse is the nerve stuff.
What about the heat + castor oil for the liver? I dont think that causes anything in me. Wonder why the Ultras would.
I'm on activated charcoal only right now. 2 at night.
Posts: 606 | From sw suburbs of chicago, Illinois | Registered: Mar 2016
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klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
The Rheumy said no need for expensive and painful testing for small fiber neuropathy, since the treatment of the symptoms will be the same with or without dx.
Neuro said my SFN was caused by too much vit. B6, from taking B complex just once every day. My B6 was astronomical from doing that and took 6 mos. to go down to normal. Some is permanent and I cannot take B Complex ever again.
R-Lipoic acid helps me a lot, as does Benfotiamine. Avoiding high acid foods seems to help me...I can eat raw tomato but not cooked, for example.
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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posted
I agree about the B6 being dangerous for our nerves. I suspected that issue, but by the time I was able to get a doctor to test for it, I had been off B6 for 2 weeks.
It was normal on the test.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
I take b6 p5p but only 8 mg. I break a 25 mg cap into 3 caps. I know about b6 toxicity that's why I'm careful. None of my docs knew about it. They're like it's water soluble. Smh
Posts: 606 | From sw suburbs of chicago, Illinois | Registered: Mar 2016
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
I don't have any personal experience with neuropathy, but this neuropathy repair guide by LLMD Marty Ross arrived in my In-Box recently. I know that all of his materials are excellent, so I would expect this webpage to be equally useful also.
Posts: 4563 | From TX | Registered: Sep 2002
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
Klutzo mentioned Befotiamine. Here's a link to their website which contains lots of good info about it and where you can order it: https://www.benfocomplete.comPosts: 4563 | From TX | Registered: Sep 2002
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klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
I was taking 150 mgs. P5P. Neuro told me I could not ever take more than the 2 mg. RDA, and not to take even that until I had gone for a year w/o the severe sx.
If you have MTHFR mutations, I think maybe B6 in food may be all you can handle. I have two of the mutations, but did not know it until after this happened.
I get my Benfotiamine from vitacost and it costs me about $4 per month. I only need 150 mgs. daily. Some people will need twice that.
Of course, it can be dangerous to take a lot of one B vitamin and benfotiamine is lipodized B1. I also take a methyl B12 sublingual.
The solution is normally to take a B Complex also. I just try to eat plenty of foods with B vits.
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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posted
I am sending you a private message with contact info to a Neurology practice in the NW suburbs of Chicago—Barrington area (I see you are in the SW Chi burbs and I live in the West Chi burbs). I had the hardest time as well trying to find a practice in the Chicago area a few years back that would do a skin punch biopsy for SFN.
My biopsy fortunately came back as negative. Although I had horrific debilitating burning nerve pain like multiple razor blades slicing in my lower arms and legs, hands and feet, it was not SFN or anything that ended up being permanent.
I ended up taking CSM (Cholestyramine) as part of the Shoemaker protocol for Biotoxins after discovering I had the biomarkers for Biotoxin Illness (aka Chronic Inflammatory Response Syndrome). I eventually got this symptom under complete control along with antibiotics (!) although it will flare up from time to time with herxes, but always goes away again and is not as scary, now knowing it’s not permanent.
I hope your situation turns out to be something similar, but if you can get your insurance to cover it, I would definitely go do the biopsy per my PM contact info to make sure it isn’t more serious! I can definitely commiserate... mine was so bad I was constantly going to the ER in desperation to get pain relief and no dose of anything IV would hardly make a dent in it. Neuropathic pain is the WORST and indeed can be very scary.
~KJ
-------------------- SICK AUG 2010 / DIAGNOSED AUG 2011 LYME IGENEX WB CDC POSITIVE IGM: 31++ 34IND 39+ 41+ 83-93+ CLINICAL DIAGNOSIS: Bartonella and Babesia REMISSION MAY 2012-DEC 2014 SEVERE RELAPSE JAN 2015 STILL WORKING SLOWLY TOWARD REMISSION AGAIN IN 2019 Posts: 39 | From N. Illinois | Registered: Jun 2011
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posted
I have mthfr half blocked on both parts. I've had b6 come up low b4.
I will be starting my mycotoxin detox once I finish a bottle of a fish oil called MONOPURE. Very expensive oil from xymogen. My lyme doc wanted that high b4 starting my detox.
Tho I won't be taking csm, but takesumi instead. Another holistic doc said csm may actually be harmful, and it also decreases bile. As it is a cholesterol med. He's had better results from takesumi.
Also will be on choline, renaven and mo-zyme Forte. All for mold. Am hoping it's the mycos causing this pain.
I treated lyme for 3 yrs w no noticeable improvement and never treated mold. Then switched docs and got the myco test and was super high on 4 of them. Pretty pissed off. All that time wasted.
[ 07-30-2019, 03:31 PM: Message edited by: 6Hypnone ]
Posts: 606 | From sw suburbs of chicago, Illinois | Registered: Mar 2016
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posted
@6Hypnone, I truly hope some of the Neurology contact info I have PM’d you will help you get a small fiber nerve biopsy as discussed above, even if to just rule things out like when my LLMD referred me a few years back to Neurology to get Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) ruled out as my burning nerve pain was rather profound at the time. The EMG/Nerve Conduction and Skin Punch Biopsy for SFN all came back “normal” and it all turned out to be a mix of Lyme and Bartonella (in particular) and Biotoxin illness. Started treating Bart with Biaxin XL + Bactrim DS (turned out to be a great Bart combo for me) and started CSM for Biotoxin illness. This got the nerve pain under pretty good control in a couple months, though it still will flare occasionally during a herx when a med is changed, etc.
So you seem to be on the right track with using toxin binders. I would also suggest taking a second look at your confections to see if Bart may be in your history or suspected by your physician—it can cause rather nasty psych and neuro symptoms of all flavors.
There are studies that Dr. Richie Shoemaker conducted some years ago on the long term safety of CSM For Biotoxin illness/CIRS. You’d have to google for it if interested. He’s the only physician I’ve known to date who has conducted his own research in using toxin binders. He found CSM to be the most effective for the most common types of biotoxins in his patients. Now, that said, CSM does not bind ALL toxins so adding clay, charcoal, chlorella, etc. may be helpful and that’s the point where I’m at adding the natural binders into my CSM regimen. CSM literally saved my life and I’ll be on it until the day I die if I have to. If I take a break from it life becomes hell again—even in a mold-free inspected home (with the proper ERMI or HERTSMI-2 dust tests from Mycometrics) that is regularly monitored (I have the multi-susceptible HLA-DR pattern for predisposition to issues with both Lyme AND Mold toxins. Lucky me!) The only caveat I know of for using it long term is you may need to take fat soluble vitamins—A, D, E, K for example as a precaution. You can find more information on Dr Shoemakers studies and Biotoxin protocols at http://survivingmold.com
Generally you would want to be on high dose EPA/DHA fish oil prior to and while during the first few weeks or so of adding the binder. I don’t know about other binders, but with CSM there is commonly an “intensification reaction” with Lyme patients in particular, where it feels like a “herx” and a rise can be seen in the MMP-9 levels if your doctor is following labs. I highly suggest seeing a Shoemaker certified physician, but if this is not financially or logistically possible, then you can try to get your LLMD or other holistic/integrative physician to order the labs to track your progress on your binder. More information on the exact labs to watch can be found at the link above.
If the high dose fish oil does not cut it and starting the binders slowly still creates an unbearable initial reaction such as in my case, you can ask your doctor for a 10-day course of a drug called Actos which works in a similar way to what the high dose fish oil does in this instance, but I found works much more effectively and allowed me successfully get up to dose rather quickly on my binder. Just to have something to keep in mind if you run into trouble :-)
I also have the MTHFR A1298C Homozygous (2 copies) which makes detox all the more difficult, so I hear ya on how difficult detox can be when genetics are not in your favor. I’ve also had low B6 levels as well at times—I must note that low levels themselves can cause neuropathy and also high levels. A few years back I had B6 levels 3 times the top of the lab range and the neuro said this definitely was contributing to neuropathy—however, I was not supplementing with anything with B6 in it!!! Wanted to send me to toxicology but said the only thing they’d likely do is tell me to stop supplementing with something that I wasn’t taking lol. Anywho...I started working with low doses of Methylfolate like 400mcg or 100% of the RDI and somehow I suspect that must’ve gotten methylation moving and the B6 used up as a cofactors in methylation processes because the next time I had someone test my B6 levels they were “magically” back right in the middle of the healthy lab range. So you may want to consider looking more into methylation and lookup the work of Dr. Amy Yasko as she’s a pioneer in that field and supplies many of her books free to read online, only most of her writing is highly technical as methylation stuff can get complicated. I have my Masters in Education and read a lot and sometimes get overwhelmed by her writing and diagrams lol.
Some last things to consider—CSM I don’t believe binds heavy metals so other products may be recommended by your physician for that purpose. I’m currently working on adding in Charcoal/Clay Caps and Chlorella to my detox regimen.
Also—are you taking Glutathione? Just curious because this is a supplement I generally cannot tolerate. I used to see one of the top LLMDs on the East Coast and he simply explained it that because of the Biotoxin illness/CIRS, the Glutathione was pulling toxins and metals out of the tissues quicker than I could bind them from my GI so they wouldn’t get reabsorbed. So he advised I just take the Glutathione “building blocks” instead like Alpha Lipoic Acid (ALA) and N-Acetyl-L-Cysteine (NAC).
Just my two cents with my vast experience on the topic of Biotoxin illness/CIRS and toxin binders. I hope you find relief soon no matter which exact path you decide to take in regards to this!
Take care,
~KJ
-------------------- SICK AUG 2010 / DIAGNOSED AUG 2011 LYME IGENEX WB CDC POSITIVE IGM: 31++ 34IND 39+ 41+ 83-93+ CLINICAL DIAGNOSIS: Bartonella and Babesia REMISSION MAY 2012-DEC 2014 SEVERE RELAPSE JAN 2015 STILL WORKING SLOWLY TOWARD REMISSION AGAIN IN 2019 Posts: 39 | From N. Illinois | Registered: Jun 2011
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posted
6Hypnone and kj15 - please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme. Thanks.
Posts: 8981 | From Illinois | Registered: May 2006
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