Burning Mouth Syndrome following dental extraction nightmare - please help!

[nervepain2021]

Resistance to gabapentin is legend. The more you take the more you need. My experiment with that concoction was shortlived

I have a feeling I will be in the same boat. It’s taking off about 20% of my discomfort so for now I will stick with it but I’m done upping the dosage, and starting to verrry slowly wean down the Ativan.

 

[Nemo]

Thanks for the moral support Nemo! I will def prioritize vit D and sunlight. My husband said let’s fly somewhere warm but I got a little anxiety over that, maybe after the specialist visit next week I will consider it. I took the icecream away when the oral thrush happened, got scared of candida. In the last few weeks I have titrated back up on my fruits and sugar, so far seems fine. My tongue went from thrush, to bald red, to now having a slight white coating which mirrors anyone in my family. Plus my taste finally came back which had been metallic since the extraction day. So it’s really the burning mouth in the upper and lower palates that is left. I may try that niacinamide for the candida/whatever gut stuff is going on plus some other remedies that folks on this thread have so kindly shared. But the icecream should come back.
My family has been amazing, my husband encourages me to be more social and that’s been hard. I had two days of tears just coming out of nowhere, but today is better-I was out, going for a walk with my sister later and life feels hopeful again. The pain hasn’t diminished much and I have increased the Gabapentin so unfortunately that may not be working for me. Im
Hoping some of these other supplements bring the pain down so that I don’t need to take it anyway. I know during the extraction and infection, 800 mg Advil was the only thing that worked. I haven’t tried it since last month bc I felt like I had taken SO much of it, but may be worth trying just for relief.
Thanks again, esp for chiming in on a Saturday! Hope you all are having a great weekend

Don't take away sugar, Nervepain. Sugar keeps candida from getting out of hand.

Candida Myths

Candida myths, ray peat and candida, lita lee and candida

eastwesthealing.com

Here's a study for you on Vit D3 for candida:

Vitamin D3 a new drug against Candida albicans - PubMed

These values indicate that vitamin D₃ can be considered to have fungicide activity. This antifungal effect may be due to the large lipsolubility of vitamin D₃ changing the integrity of the cell membrane.

pubmed.ncbi.nlm.nih.gov

Here's Vitamin D3 as a good surrogate for thyroid supplementation:

Vitamin D deficiency impairs muscles by lowering energy production – To Extract Knowledge from Matter

Low vitamin D3 levels associated with chronic nerve pain:

Serum 25-hydroxy vitamin D levels in patients with complex regional pain syndrome | Request PDF

Request PDF | Serum 25-hydroxy vitamin D levels in patients with complex regional pain syndrome | Objective: Complex regional pain syndrome (CRPS) is one of the chronic pain disorders. The etiopathogenesis of CRPS is still undefined.... | Find, read and cite all the research you need on ResearchGate

www.researchgate.net

 

[Nemo]

Resistance to gabapentin is legend. The more you take the more you need. My experiment with that concoction was shortlived

I hate gabapentin.

A vet prescribed it for my dog and it did nothing for the pain but caused bizarre growths.

 

[nervepain2021]

I hate gabapentin.

A vet prescribed it for my dog and it did nothing for the pain but caused bizarre growths.

Yikes more reason for me to get the vit D, sun and icecream and wean back on the other stuff..

 

[nervepain2021]

I hate gabapentin.

A vet prescribed it for my dog and it did nothing for the pain but caused bizarre growths.

Don't take away sugar, Nervepain. Sugar keeps candida from getting out of hand.

Candida Myths

Candida myths, ray peat and candida, lita lee and candida

eastwesthealing.com

Here's a study for you on Vit D3 for candida:

Vitamin D3 a new drug against Candida albicans - PubMed

These values indicate that vitamin D₃ can be considered to have fungicide activity. This antifungal effect may be due to the large lipsolubility of vitamin D₃ changing the integrity of the cell membrane.

pubmed.ncbi.nlm.nih.gov

Here's Vitamin D3 as a good surrogate for thyroid supplementation:

Vitamin D deficiency impairs muscles by lowering energy production – To Extract Knowledge from Matter

Low vitamin D3 levels associated with chronic nerve pain:

Serum 25-hydroxy vitamin D levels in patients with complex regional pain syndrome | Request PDF

Request PDF | Serum 25-hydroxy vitamin D levels in patients with complex regional pain syndrome | Objective: Complex regional pain syndrome (CRPS) is one of the chronic pain disorders. The etiopathogenesis of CRPS is still undefined.... | Find, read and cite all the research you need on ResearchGate

www.researchgate.net

Great stuff! Thank you so much, reading all of these now ??

 

[Nemo]

Great stuff! Thank you so much, reading all of these now ??

Here's to feeling well enough to fly away with your hubby very soon.

 

[nervepain2021]

Here's to feeling well enough to fly away with your hubby very soon.

?

 

[Luann]

Wishing you well. I wouldn't wish that kind of pain on anyone.

 

[yerrag]

That's a good analysis @yerrag. Also, thanks for pushing the SSKI in my place as I probably come off as an iodine junkie around here. But yeah, whenever an infection is present, iodine (in the form of SSKI or Lugol's) is always a good anti-inflammatory strategy to limit excessive host tissue destruction.

Thanks Jam. I'm glad for the use of iodine in the form of SSKI or Lugol's that your shared. I think that it will also help Nervepain as much as it has helped me. While there is always a need for caution in the use of iodine, a blanket avoidance of iodine may deprive one of the benefits of using iodine as an antibacterial in periodontal infection, as well as its use in place of chlorine in the halide-myeloperoxide system of neutrophils to produce bacteria-killing oxidants. HOI- producing less peripheral oxidative stress than HOCl- will be less stressful on tissues.

I went to an acupuncturist when I was just weeks in to the extraction saga, and his methodology was very painful - every needle was so painful...and then he did accupuncture which literally brought me to tears. He said my biggest challenges were not my liver (my assumption was all the high dose advil, antibiotics and medications which i didn't even realize i'd be taking a month later like Gabapentin and Ativan) were wreaking havoc on my liver. He said I had high phlegm in my body which is a very hard situation to reverse, and that my kidneys were the most compromised. When he did the accupressure it was only on my feet and ankles/lower legs and it was excruciating.

He seemed to detect your issues well without looking at blood tests, and that is uncanny. The part about phlegm may be true. It won't be surprising given the issues you have with oral health, and it did not come suddenly but was building up silently over the years. By phlegm being high in the body I would take that as their language for high bacterial infection on a systemic level, which is very often caused by periodontal issues. I am a living example of that- and working to fix it for good. Ditto for its effects on the kidneys, although in both our cases the kidney is not really suffering great harm, although the kidneys are affected but wisely adapting to the situation. If we keep ourselves from intervening with the body's adaptation to stress, we can save ourselves from needless work creating fires for us to put out later. We can use the time for finding the root cause and eliminating it.

We don't know what infection is underlying all of this, I assume the thrush was something yeast related given my prior diagnosis back in 2016. Given all of that, would you have any general guidelines on protein/carbs/fat for me to target?

The infection is not due to one bacteria or fungus. It is a colony of different bacteria and fungi helping each other survive. They have developed this level of cooperation by evolution to survive. We can use the knowledge we have gained from research to understand their strengths and their weaknesses in order to defeat them. I'm glad you are using functional medicine doctors instead of conventional doctors, and I hope that he has a mind as sharp as that of a skilled car mechanic, as a good troubleshooter is what you need. A car mechanic doesn't get paid unless the cause is identified and your car is back running again. It would be nice if a doctor can hold himself to that standard instead of mouthing off phrases like "we don't really know because everything has to be evidence-based, and we don't have enough evidence."

As for nutritional guidelines, you're already doing a lot towards keeping your buffers full by not being in any nutritional deficiency. Since you're in Northern Cali, I suppose you can benefit from getting as much nutrition from food than from supplements. Eat a good variety of foods from nature and being well-balanced nutritionally would be less of an effort for you. One Peat advice I would recommend is to increase your intake of gelatin. This would provide you with ample glutathione to beef up your anti-oxidant stores. If your body's antioxidant stores are full, then you would be able to meet the oxidative stresses that come with having a systemic infection that comes with its baggage of inflammation and oxidative stresses, and it would keep your tissues and organs safe from any destruction.

Only lately have I realized how by my consciously allowing my high blood pressure to stay high without taking any medication has paid off for me. For twenty years, my blood pressure kept going up, as I kept finding ways to find the root cause. It's taken this long to find the root cause, but the long time involved has not caused my body to be destroyed. It's because the high blood pressure is caused by my body's antioxidant system working full-time and protecting me from any tissue and organ damage. My inflammation markers LDH, hsCRP, and ESR, have stayed very low despite my system being full of inflammation. It turns out that instead of my tissues being destroyed from oxidative stress caused by chronic inflammation, my serum albumin is being oxidized in their place. it was acting as a sacrificial lamb in their place. Since albumin can easily be produced by my body, there is no long term harm. If my organs were destroyed, on the other hand, as a result of medical intervention, like taking hypertensive drugs, then I would have been left with a body that has degenerated.

If there is anything else you would suggest in the short term around the kidneys let me know.

Just don't keep trying to save it from harm. The high BUN will become normal when you are able to resolve the putative high level of systemic infection. The high BUN is an adaptation by the kidneys to protect itself, so in my opinion the best thing you can do is to let it do what it knows best to do.

 

[nervepain2021]

Wishing you well. I wouldn't wish that kind of pain on anyone.

Thank you, my sentiments exactly! My empathy for those in chronic pain, and also a recognition for how quickly a health issue can dominate your life is so high. Health is everything!

 

[nervepain2021]

Thanks Jam. I'm glad for the use of iodine in the form of SSKI or Lugol's that your shared. I think that it will also help Nervepain as much as it has helped me. While there is always a need for caution in the use of iodine, a blanket avoidance of iodine may deprive one of the benefits of using iodine as an antibacterial in periodontal infection, as well as its use in place of chlorine in the halide-myeloperoxide system of neutrophils to produce bacteria-killing oxidants. HOI- producing less peripheral oxidative stress than HOCl- will be less stressful on tissues.



He seemed to detect your issues well without looking at blood tests, and that is uncanny. The part about phlegm may be true. It won't be surprising given the issues you have with oral health, and it did not come suddenly but was building up silently over the years. By phlegm being high in the body I would take that as their language for high bacterial infection on a systemic level, which is very often caused by periodontal issues. I am a living example of that- and working to fix it for good. Ditto for its effects on the kidneys, although in both our cases the kidney is not really suffering great harm, although the kidneys are affected but wisely adapting to the situation. If we keep ourselves from intervening with the body's adaptation to stress, we can save ourselves from needless work creating fires for us to put out later. We can use the time for finding the root cause and eliminating it.

The infection is not due to one bacteria or fungus. It is a colony of different bacteria and fungi helping each other survive. They have developed this level of cooperation by evolution to survive. We can use the knowledge we have gained from research to understand their strengths and their weaknesses in order to defeat them. I'm glad you are using functional medicine doctors instead of conventional doctors, and I hope that he has a mind as sharp as that of a skilled car mechanic, as a good troubleshooter is what you need. A car mechanic doesn't get paid unless the cause is identified and your car is back running again. It would be nice if a doctor can hold himself to that standard instead of mouthing off phrases like "we don't really know because everything has to be evidence-based, and we don't have enough evidence."

As for nutritional guidelines, you're already doing a lot towards keeping your buffers full by not being in any nutritional deficiency. Since you're in Northern Cali, I suppose you can benefit from getting as much nutrition from food than from supplements. Eat a good variety of foods from nature and being well-balanced nutritionally would be less of an effort for you. One Peat advice I would recommend is to increase your intake of gelatin. This would provide you with ample glutathione to beef up your anti-oxidant stores. If your body's antioxidant stores are full, then you would be able to meet the oxidative stresses that come with having a systemic infection that comes with its baggage of inflammation and oxidative stresses, and it would keep your tissues and organs safe from any destruction.

Only lately have I realized how by my consciously allowing my high blood pressure to stay high without taking any medication has paid off for me. For twenty years, my blood pressure kept going up, as I kept finding ways to find the root cause. It's taken this long to find the root cause, but the long time involved has not caused my body to be destroyed. It's because the high blood pressure is caused by my body's antioxidant system working full-time and protecting me from any tissue and organ damage. My inflammation markers LDH, hsCRP, and ESR, have stayed very low despite my system being full of inflammation. It turns out that instead of my tissues being destroyed from oxidative stress caused by chronic inflammation, my serum albumin is being oxidized in their place. it was acting as a sacrificial lamb in their place. Since albumin can easily be produced by my body, there is no long term harm. If my organs were destroyed, on the other hand, as a result of medical intervention, like taking hypertensive drugs, then I would have been left with a body that has degenerated.


Just don't keep trying to save it from harm. The high BUN will become normal when you are able to resolve the putative high level of systemic infection. The high BUN is an adaptation by the kidneys to protect itself, so in my opinion the best thing you can do is to let it do what it knows best to do.

Thank you again Yerrag - your points make so much sense. And I do agree that if you give the body what it needs, within reason it can usually do the rest. The targeted supplements that have been suggested are very helpful as I would not even know where to start. And while I admire my functional doctor, having had a good relationship with her as a MD years ago (and always thought of her as a MD who 'got it'), I am quickly realizing that she is likley not going to be as helpful as I had hoped. To start, she sort of turned away from my requests around Cyprohetadine and Full Monte panels, after agreeing to it. I'm prob much better off now having placed an order of Cyrpo through Idealab thanks to @Jam, but it was frustrating nonetheless to sort of get her support for seemingly low risk things, and then a few days later get push back. Meanwhile she had no issue providing me Ativan and upping Gabapentin (which believe me, they have had their place and helped tremendously from a few weeks ago - well the Ativan at least), but it just reinforces the idea of where the focus goes.

I do not think she will be much of a detective, as she saw my blood work as all normal - from a thyroid and blood perspective. She has access to my old labs against the newest, and generally said 'all looks great, better than before, keep up the good work'. It does help validate the nutrition (and adding back gelatin is a great idea - i do some gelatinous meats during the week, or will add gelatin to my soups, and I use collagen daily - but had stopped making the gummies when I started to overthink the sugar 'thing' and whether it was making candida (or whatever the heck I'm dealing with) worse. I will get back to those b/c having some gummies (i usually make with honey and some juice) are good in a pinch. Plus the kids gobble them up. Also i'm happy to say OJ does not appear to make my burning mouth worse, and it's prob one of my top cravings at this time so i'll keep in my few glasses a day.

All of you have been more help in terms of connecting dots and making thoughtful suggestions, and I will be ever grateful for it (and will report as I use new things - everything should be delivered over the course of the week).

Laying in the sun yesterday really helped...prob on an emotional level too. Plan to do the same today since it's the weekend. I woke with less of a sore mouth than normal. Yesterday my sister and I went on a long walk, talking to her helped keep me distracted through my more painful hours...and then my parents stopped by - also a welcome distraction. I will tiptoe back to more safe socializing which my husband has been gently pushing, it definitely gets me away from just being in pain and having nothing else to think about in those afternoon and evening hours. No fun counting the mins down to bedtime.

I agree about the accupuncturist, I may pay him a visit again and just ask him to go a bit less painful on the accupressure. It was pretty excruciating last time, but he said over time I would not feel so much pain...and as mentioned, he totally said kidney was where my main issue was. I am happy to hear your perspective around just letting the kidney do it's thing and be protective, the body is so wise.

Did anyone do Dr Ellie's oral protocol? I saw that on another thread and just started adding a little xylitol gum for a few mins after rinsing my mouth after meals, then spitting excess saliva a few times to not inject too much xylitol. Curious if that was helpful to anyone, i messaged one person who uses a few of the products still (not everything) and was quite happy years down the road.

Off to make my stash of bone broth, eggshell calcium, and gelatin gummies - while lying outside in between. Wish you all a wonderful rest of the weekend and many thanks from the bottom of my heart for all of your advice and the many q's I am sure i will continue to ask about :)

 

[nervepain2021]

Hi All - I hope you are all doing well. I just wrapped up a specialist visit today where they took cone beam imaging and did a full eval on the extraction site, all teeth, and oral tissues. Extraction site is healing fine and there was no sign of remaining jaw bone infection (so the second cutting seems to have taken everything out), however the dentist does not believe the jaw bone will heal itself. That being said, he thinks it should be left alone for a while (esp given the burning mouth pain continues) and let the body heal from antibiotics, 2 extraction/gum surgeries, and all the emotions that come with it. And then he would recommend a RPF procedure where he takes my own blood, spins out certain components and uses that to form the bone grafting materials. It would involve cutting into the gums again, but he said we can revisit this in Aug timeframe. He said that if there is a lingering infection in the gum tissue, it will always reject foreign materials like bone grafts. Meanwhile I'm going to keep up the K2 and dairy and all the other good nutrition you have all recommended + someone messaged me about calcium therapy - which involves some calcium/zinc strips you place along your gums which can help bone regenerate. Let's hope for the best.

For the burning mouth, he did not see anything in my oral tissues to indicate some pathogen or oral virus. He does see some white coating on my tongue but said it's likely my digestion trying to get better. He is confident it will go away but he feels it will do that when the body comes back into balance (whether that is from inflammation, digestion, detoxing medications and eventually weaning off the ones i'm still on, possible hormonal imbalances or other mineral deficiencies, etc etc). I am completing my saliva hormone/cortisol test tomorrow - by next week I should have some indication of prog/estrogen etc levels. Thryoid labs already came in and nothing seemed too out of range for my functional dr to recommend thyroid meds. And I will get most of a full Monte panel done on Friday and can share that as well. As far as mineral deficiencies, the dentist has a nutritionist he recommends who can do this. I figure I do the hormones first plus continue all that you on this thread have recommended + some Idealabs supplements which are arriving this week (thanks Jam!). And hopefully we see some pain reduction quickly.

Functional dr told me to try the alpha lipoic as well - 600 per day.

Thank you all again for all the support, I'll keep you posted when I get labs in and any new supplement experiences.

 

[Kaur Singh]

Burning Mouth Syndome and Vitamin B6

Dear Editor,

academic.oup.com

Problems with B6 metabolism are pretty common in those with Strange Diseases.
Pyrodoxal 5'-Phosphate (B6 vitamer - PLP/P5P same thing) can be high in bloodstream and/or 'intolerance/sensitivity' to supplementation.
Chief symptoms reported = insomnia, nerve weirdness.

Many report that their B6 levels come down once their symptoms/metabolic state improve.
I have what I call a phantom cavity on a tooth where root canal was done. As my general health improved, so did that and all my nerve issues around my jaw/face/head. So did the burning mouth. That one used to flare up and down - it was one of the ways I would know my PLP was out of whack again, and under more than normal oxidative stress.

You can have your PLP levels checked. Keep in mind that the phlebotomist needs to cover up the collection vial before drawing blood out - results turn out falsely lower if not. Many labs mess this part up. Even a little bit of exposure can make a big difference.

The advil - aren't NSAIDs known to 'hit' the liver?
Can this alone provoke a stress response, hence, your B6 took a hit?

If you are taking a B-complex, the B6 in it may be exacerbating your issues.
- can you remember when the burning mouth started in relation to the supp?
It may be wise to stop it, observe/feel what happens.
(It may also be wise to try out each B separately before taking a complex)

While you are it, what are your ALP levels from the past years?
Didn't see it on the test results you included at the beginning of the thread.

 

[nervepain2021]

Burning Mouth Syndome and Vitamin B6

Dear Editor,

academic.oup.com

Problems with B6 metabolism are pretty common in those with Strange Diseases.
Pyrodoxal 5'-Phosphate (B6 vitamer - PLP/P5P same thing) can be high in bloodstream and/or 'intolerance/sensitivity' to supplementation.
Chief symptoms reported = insomnia, nerve weirdness.

Many report that their B6 levels come down once their symptoms/metabolic state improve.
I have what I call a phantom cavity on a tooth where root canal was done. As my general health improved, so did that and all my nerve issues around my jaw/face/head. So did the burning mouth. That one used to flare up and down - it was one of the ways I would know my PLP was out of whack again, and under more than normal oxidative stress.

You can have your PLP levels checked. Keep in mind that the phlebotomist needs to cover up the collection vial before drawing blood out - results turn out falsely lower if not. Many labs mess this part up. Even a little bit of exposure can make a big difference.

The advil - aren't NSAIDs known to 'hit' the liver?
Can this alone provoke a stress response, hence, your B6 took a hit?

If you are taking a B-complex, the B6 in it may be exacerbating your issues.
- can you remember when the burning mouth started in relation to the supp?
It may be wise to stop it, observe/feel what happens.
(It may also be wise to try out each B separately before taking a complex)

While you are it, what are your ALP levels from the past years?
Didn't see it on the test results you included at the beginning of the thread.

Hi Kaur Singh - thank you so much for the info. And so sorry to hear of your own dental and nerve pain woes. It is no joke... I read the link you shared, interesting. To answer the q's around B complex & when burning started, not sure it's correlated but here is the timeline of my dental extraction - to the best of my memory:

Root canal Feb 10
2 weeks no pain
Pain returns - dentist adjusts bite. Pain continues - discussion and decision to extract tooth (no knowledge of bone infection as he only did 2D xrays)
March 22nd - tooth extracted. Dentist planned to put implant, but discovered infection when pulled tooth - scraped out infection and put in bone graft.
Tongue looked horrible from day one, metallic taste in mouth & somewhat of a loss of taste of food (not complete, but just off)
March 25th pain had increased daily - heavy bleeding of several adjacent teeth upon flossing, prompting trip to ER to get antibiotics (b/c dentist was out of town). Adjacent teeth super painful.
8 day course penicillin (i think it was 4x/day - 500 mg). Throbbing pain and jaw pain for several days, only 800 mg advil worked (narcos etc did not)
Pain reduces after about 4 days - think i'm in the clear. Continue to see dentist 1-2 times a week (ozone treatments given or just a visual look). Took sach boullardi and small doses of oregano.

Somewhere around 14-16 days after extraction, I notice an aching in my lower and upper front teeth, right at the spot where the gums and teeth meet. This would be the first memory I have of burning mouth type symptoms as it was in the same exact locations it continues to be. I was not on B supplements yet

April 12 (21 days after extraction) - I mention aching to dentist and he says 'well you have some yeast overgrowth on your tongue'. Prescribed single dose diflucan (150 mg) - take that day. Start taking Caprylic acid and oregano pills 2 each twice daily for assumed systemic candida/bacteria issues.

Likely April 13'ish I started taking Garden of Life Raw B complex - attached image of B's included and %. Until then I was not taking any B supplements, I only started upon recommendation of my mother in law who said B complex + folate helps clear white tongues.

April 13 - prescribed liquid Nystatin swish & swallow. Tongue becomes disgusting, looks like a thick white brillo pad. Entire mouth feels sore and extraction still feels not quite right.
After about 5 days on Nystatin, feel like the tongue is getting worse. Each time it feels like the fungus grows after using. I make my own decision to use it but only swish and spit out since it also caused digestive distress.
April 26 - dentist agrees Nystatin is not helping and says to just brush tongue with baking soda. I do so for a few days, putting one mixed drop of bee propolis extract and the tongue starts to look better each day.
May 4th - throat swab done for candida. Comes back negative. Tongue was 75% improved, but no clue what fungus it was (just assumed candida given my history with candida overgrowth in past)
May 3 - dentist recuts entire extraction site due to continued pain, and pain in adjacent teeth. Discovers there is no bone graft and is not sure what happened, but says 'the graft didn't taken, only left with granulation tissue'. Basically treated for dry socket with bone exposed & clove oil packing.
Within a few days the socket is less painful, adjacent teeth stop hurting

Since May 3rd, my pattern has been that the mornings are quite painless...by 11 there is some aching in those upper and lower palates (just below and above the bottom and top from 4-6 teeth). As the day goes on, and especially after 4 pm, the pain gets more severe and can feel a bit like burning - radiating across the gum tissues to the left and right of the original areas. In the last 3'ish days, I have started to feel sensation on my tongue as well - sort a spot 1/3 of the way down my tongue - more of a tingly discomfort.

Yesterday I traveled to the specialist and it was the first day since mid April I did not take a B complex. My pain after 4 pm was significantly worse than normal - to the pt where I cried half the ride home. But normal evening pain is also pretty crappy - it ranges from level 5 to 7 out of 10. My diet for the day was also lower in calcium, I packed along gelatin and cooked fruits, some eggs, some supplements...but we did eat one meal out and I def didn't eat with the frequency I do at home.

Today I did take my B complex and it has been less painful than yesterday, prob credit to laying in the sun again for about 30 mins, food frequency, and acupuncture. It's 7:30 pm now and I did take 300 mg Gabapentin at 4:00, but i would say my pain level is around a 6. Generally speaking the Gaba seems to reduce pain around 20% so I have toyed with the idea of weaning back slowly to see how the pain goes since I want off the meds at some pt and it's not helping all that much. But for now 20% relief might be worth it.

 

[nervepain2021]

You can have your PLP levels checked. Keep in mind that the phlebotomist needs to cover up the collection vial before drawing blood out - results turn out falsely lower if not. Many labs mess this part up. Even a little bit of exposure can make a big difference.

The advil - aren't NSAIDs known to 'hit' the liver?
Can this alone provoke a stress response, hence, your B6 took a hit?

I will ask about PLP check, as my dr put in a lab for most of the Full Monte plus she added one or two other things. When you say cover up the collection, I assume if I tell the phlebotomist that s/he would know what to do? But for my layman's sake, what do you mean by cover up?

I was on a lot of advil for sure. I am now experiencing acne everywhere - I have been prone to bad skin growing up and on and off through the years - but never on my chest, back and neck. So I am unsure if it's advil and antibiotics detoxing, Gabapentin, my hormones, or a combo - but that's new as of last week.

I can do an experiment of not taking the B complex for a few days and report back. Let me know if based on what I shared, if you have any suggestions in one direction vs another. I had considered niacinamide based on recommendation earlier in this thread but hadn't gone to buy any yet, so will hold for now. I know there isn't an answer anyone can give me, but definitely appreciate any thoughts.

 

[nervepain2021]

While you are it, what are your ALP levels from the past years?

I don't believe those were ever drawn, I can also ask to include in this lab and see if my func doc agrees.

 

[nervepain2021]

Burning Mouth Syndome and Vitamin B6

Dear Editor,

academic.oup.com

Problems with B6 metabolism are pretty common in those with Strange Diseases.
Pyrodoxal 5'-Phosphate (B6 vitamer - PLP/P5P same thing) can be high in bloodstream and/or 'intolerance/sensitivity' to supplementation.
Chief symptoms reported = insomnia, nerve weirdness.

Many report that their B6 levels come down once their symptoms/metabolic state improve.
I have what I call a phantom cavity on a tooth where root canal was done. As my general health improved, so did that and all my nerve issues around my jaw/face/head. So did the burning mouth. That one used to flare up and down - it was one of the ways I would know my PLP was out of whack again, and under more than normal oxidative stress.

You can have your PLP levels checked. Keep in mind that the phlebotomist needs to cover up the collection vial before drawing blood out - results turn out falsely lower if not. Many labs mess this part up. Even a little bit of exposure can make a big difference.

The advil - aren't NSAIDs known to 'hit' the liver?
Can this alone provoke a stress response, hence, your B6 took a hit?

If you are taking a B-complex, the B6 in it may be exacerbating your issues.
- can you remember when the burning mouth started in relation to the supp?
It may be wise to stop it, observe/feel what happens.
(It may also be wise to try out each B separately before taking a complex)

While you are it, what are your ALP levels from the past years?
Didn't see it on the test results you included at the beginning of the thread.

Func Dr's reply: I added Vitamin B6 to the labs. ALP was done and normal and I don't think that PTH is necessary given your normal Calcium levels. PTH hormone is responsible for Calcium regulation - and though there is a relationship between Calcium and Vitamin D, we would be more suspect if Calcium levels were altered rather than normal.


I myself didn't see ALP but will go back to double check where it's listed since I'm still learning about values, how to analyze etc. PTH was something I had asked about in relation to thinking about Vit D supplementation...so disregard that piece

 

[Kaur Singh]

I should have started with this question:
Do you agree with your doctors that you have burning mouth syndrome?

We often have a much better hunch of what is affecting us than the doctors themselves.

I understand that you have various things going on with your mouth, and it may be hard to tell what is what.
I can also see that me saying things will improve as you continue doing things to improve metabolism does little to quiet down acute pain.
Have you looked up what Peat has written about pain and nerves?
There is one newsletter on his site, from what I recall.

I am curious what effect progesterone may have on acute pain - have you tried it?

I think you are the best judge of what is working (and not) for you. You have good observational skills, terrific memory, eye for detail - perceptive skills.
It gets tricky when you take multiple things at once, to zero in on what has what effect. Once can try new substances/interventions one at a time
If the B-complex is working - that tells you something. I'm not familiar with food-sourced B6 and if it can have the same effect as the synthetic versions.

For the PLP test, you would be surprised how often labs get this wrong. One could call beforehand and find out how they do it. Some use a tinted vial that blocks out UV light. Others cover it up with aluminium paper beforehand, etc. Whatever the material, it needs to 100% block out light. Results come out falsely lower otherwise.
There is literature online you can find with the correct procedure for the test, if you need this to back you up.

You also need to stop supplementation beforehand, they say two weeks - I had some literature that had some taking two full months for the levels to normalize again. I figured that I could do it one first time and if it came out high, I would just run it again after another month. If the supplement is helping you, then you can decide what do you prioritize at this time. You can always run the test in the future, and simply keep an eye out to how you respond to B6 supps.

Alkaline Phosphatase is done as part of a metabolic panel. If you have done basic blood tests in the past, you probably have previous results.
What is normal? The cut off of for normal range is also often wrong - lower than 40 U/L for adult females is considered low.
I ask about ALP because one of its functions involves mineralized tissues, and this includes teeth. I'm curious given the bone jaw issue.

There's little use in arguing with doctors.
It's best to learn to manage one's own health.

 

[nervepain2021]

I should have started with this question:
Do you agree with your doctors that you have burning mouth syndrome?

We often have a much better hunch of what is affecting us than the doctors themselves.

I understand that you have various things going on with your mouth, and it may be hard to tell what is what.
I can also see that me saying things will improve as you continue doing things to improve metabolism does little to quiet down acute pain.
Have you looked up what Peat has written about pain and nerves?
There is one newsletter on his site, from what I recall.

I am curious what effect progesterone may have on acute pain - have you tried it?

I think you are the best judge of what is working (and not) for you. You have good observational skills, terrific memory, eye for detail - perceptive skills.
It gets tricky when you take multiple things at once, to zero in on what has what effect. Once can try new substances/interventions one at a time
If the B-complex is working - that tells you something. I'm not familiar with food-sourced B6 and if it can have the same effect as the synthetic versions.

For the PLP test, you would be surprised how often labs get this wrong. One could call beforehand and find out how they do it. Some use a tinted vial that blocks out UV light. Others cover it up with aluminium paper beforehand, etc. Whatever the material, it needs to 100% block out light. Results come out falsely lower otherwise.
There is literature online you can find with the correct procedure for the test, if you need this to back you up.

You also need to stop supplementation beforehand, they say two weeks - I had some literature that had some taking two full months for the levels to normalize again. I figured that I could do it one first time and if it came out high, I would just run it again after another month. If the supplement is helping you, then you can decide what do you prioritize at this time. You can always run the test in the future, and simply keep an eye out to how you respond to B6 supps.

Alkaline Phosphatase is done as part of a metabolic panel. If you have done basic blood tests in the past, you probably have previous results.
What is normal? The cut off of for normal range is also often wrong - lower than 40 U/L for adult females is considered low.
I ask about ALP because one of its functions involves mineralized tissues, and this includes teeth. I'm curious given the bone jaw issue.

There's little use in arguing with doctors.
It's best to learn to manage one's own health.

It's a very good question. At this point, i would not know what else to diagnose my symptoms as. They seem to match the general description of this catch up 'burning mouth syndrome' label. I tend to have little to no pain upon waking, and then as the day progresses the aching increases. Evening it is probably closer to a mix of aching and burning (but aching is the driving pain). I only started getting some tingling on one part of my tongue a week or so ago, before that it was just around some of the bottom and top palates of my mouth.And as it gets worse, all my teeth sort of ache too.

I am waiting on my hormone test results, and then will def look into progesterone. i just figured best to wait to see where levels are before dosing, and to see if any other components were off. I did stop the B complex b/c I was getting toward the end of the bottle anyway. It's been about 4 days, so not that long and I don't have any definitive insights. Generally the pain has been pretty similar, yesterday was a particularly bad day but i wonder if a fasted blood pull threw things off. i tried to compensate with good nutrition and carbs, but by late afternoon I was pretty worn out from the pain. The one thing that makes me feel better is lying in the sun, so i've added that to my routine for an hour a day with as much skin exposed - and some topical Vit D drops.

I will go back and specifically look for ALP since she says it was covered - and also check if my previous doctors did it in years past so there is a comparison. I have some of my labs from yday trickling in - AM cortisol was elevated and flagged high when it was pulled in Jan, yday's results were similar - a bit higher. Dr wants to run a ACTH test and an ultrasound on my adrenals now for further checks, but also indicated stress could be the driver here. Some of the iron labs came back as well - but from the thryoid panel i know it took a good 3 to 4 days to get them all so I can wait till it's all in and then paste it here for anyone who would be kind enough to give it a once over.

I agree, we have to be our own detectives here, and that is why I appreciate this community and esp everyone on this thread so much. I definitely have multiple supplements going at the same time - if anyone has worked with a coach that really gets supplements and this way of eating, do let me know. I'd appreciate some insights as I try and navigate. My main challenge is trying to stay positive (b/c I know thoughts are powerful) while being patient, but the pain crushes me - and I end up emotional at least every 2-3 days. I know it's better than to keep things bottled up, but I'm just hoping perhaps for some balance sooner than later - maybe the hormonal piece will give some insights.

I'll come back with more on the labs once they are all together so it's not too chopped up. Thank you for replying!

 

[nervepain2021]

Alkaline Phosphatase is done as part of a metabolic panel. If you have done basic blood tests in the past, you probably have previous results.
What is normal? The cut off of for normal range is also often wrong - lower than 40 U/L for adult females is considered low.
I ask about ALP because one of its functions involves mineralized tissues, and this includes teeth. I'm curious given the bone jaw issue.

I just checked and the lab ran at the beginning of this month has my ALP is 63

ALKALINE PHOSPHATASE

63

31 - 125 U/L

My lab from 2019 showed ALP as 50 in a range of 39-117

When i went to the dental specialist last week, he commented that my tooth enamel looked great. I recall it not looking great on xrays, or just having sensitive teeth. When i switched to more fruits and fruit juices at the beginning of this year, my teeth got very sensitive. That's when i started to rinse my mouth after each meal, sometimes plain water - other times with a dash of baking soda. And then sometime in Feb was when I started the K2. I've been taking high doses of K2 since then, especially since the extraction in March. When i run out of the pills I will prob consider the drops.

I keep thinking that the fish oil, Vit D, zinc etc I was taking before stopping in Jan may have been keeping my body temp a bit higher than what it was. I have always been prone to cold hands, feet, and just cold all the time. I stopped the supplements after learning about them, but i stopped them cold turkey. I developed chillblains. When i learned about pulses and temps, it was often in the 96's, i even would see lower. pulses low 60's. After a few months I noticed more 97's...now I can range anywhere between low to mid 97's to low 98's. Pulse usually high 60's to low 70's. I am gradually increasing carbs (namely fruit, OJ, and white potato once a day max), pulling back on muscle meats, increasing gelatin, salting accordingly, take liver or liver supplements (i know this has differing opinions), white fish, shell fish, oysters - try for once a week, and my supplements (K, E, aspirin...but with the additional smattering of things to try and address the burning mouth). I only recently added back topical vit D yday after my lab test. I've been off since Jan. Will share vit D test results when they come in to see what you all think, though I know those labs (and the whole topic) can be controversial.

So I wonder if i took away synthetic heat through the fish oils etc, my body temp dropped even more, i worked through that and was starting to see improvement in temps/pulses/general well being + had 1 normal cycle (first in prob 20 years) and then the tooth thing happened. I asked my functional dr about this - i even said 'at what pt can i make sense of my story' and recited the different health challenges i have experienced going back as far as I remember. And while i truly believe she is informed and will help me to some degree, she just nodded her head. And I know she thinks I am going overboard asking for additional labs that she thinks are unecessary.

Awaiting those hormone tests b/c i am quite sure it will confirm prog needed given my history, but I also recognize it's just one piece of the puzzle.