Does anyone else who has Lyme Disease suffer from Burning Mouth Syndrome? If so, have you found a beneficial treatment for it? C.P
Posted by Lymetoo (Member # 743) on :
How about we move this to medical?? Hopefully, you will get more replies there!!
Posted by Keebler (Member # 12673) on :
- What helps: Sea Buckthorn oil
I had this for years and it's been very miserable, indeed. I should also say that I've not had access to proper treatment for lyme and several coinfections.
I've been doing the best I can for myself but, with budget and access considerations, obviously I've not yet succeeded.
However, SEA BUCKTHORN OIL has been the very best help. I found that about a year ago. I've tried a few break but still need it.
I suggest getting some of that first. Other things here matter, too, but that has been so wonderful.
There may be a natural foods market or vitamin store near you where you could get some today and then order for a better price.
Also at the market and most drug stores: CANKER MELTS or XYLI MELTS but get MINT FREE.
If you have some coconut oil at home that can help but I find it wears off too soon. Sea Buckthorn oil's effects last for hours - or until my next drink of water.
You can brush teeth with coconut oil until you get a gentle kind such as Weleda Calendula Toothpaste.
LYME CAN CAUSE BURNING MOUTH for a variety of reasons.
Burning mouth can be from lyme or other stealth infections. Candida can play a part (but not for me as with herbal supplements, I just don't deal with candida as I did from past antibiotics on occasion).
FOLIC ACID, certain B-vitamins, certain fatty acids or other nutrients may be depleted.
Too much acid in your diet?
What lyme or other stealth infection can do, though is attack the cranial nerves that run through the mouth and that can cause burning mouth.
Also, if you have dry mouth, that can lead to burning mouth. Many medications can cause dry mouth. If you are on any with that side effect, I suggest, dropping all except those that are essential to your goal of treating infection -- of course first discussing with your doctor.
Stop all regular toothpaste and mouth washes. The SLS in those can just destroy the mucus membrane.
Also avoid even most natural toothpastes as the mint, clove or cinnamon in those can really burn those with burning mouth syndrome.
I've also used just coconut oil and mere bit of baking soda but that has not been as productive as I'd like, over time.
Auromere ORIGINAL blend toothpaste is very gentle but can also burn at times. Weleda Calendula Toothpaste is the only one I've found to not burn.
Adrenal support is also essential as there can be a hormone connection to burning mouth. If a woman and nearing menopause, hormone imbalance can contribute - see the adrenal thread for a start.
If you are a man, hormonal imbalances can also be connected and, as well, the adrenal thread will have some good suggestions. -
[ 07-27-2012, 04:34 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
- For help with the mouth tissue, I have found Auromere Ayurvedic Herbal Mouthwash to be excellent. Even with many essential oil, the blend is just right even for my tender mouth. I can use it straight for a good swish.
To stretch it, I pour it into a smaller bottle with a dropper and use just 2 droppers per swish. That's plenty.
When my mouth is worse, I can dilute with water so it does not burn.
I also sometimes just put a few drops into my mouth after a glass of water to help mouth combat bacteria or viruses that may be causing mouth ulcers I've been battling for a long time.
This seems to help, in addition to Sea Buckthorn Oil (from Rose Mountain Herbs).
LL Naturopathic links here, too. In that ND thread, scroll down to the BODY WORK post. UPLEDGER cranial sacral therapy may help the cranial nerves that run through the mouth. -
[ 02-07-2014, 06:08 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
- I tried every other oil on earth. This is what is instantly soothing, and healing.
Andrographis has also been instrumental to my mouth getting better from burning mouth and aphthous ulcers. However, andrographis makes me more tired so I try to go off it - but then the mouth gets worse.
So, for me, I tend to need both andrographis & Sea Buckthorn oil.
However, for those with a LLMD or LL ND and on a solid plan to treat lyme, et.al., eventually, that should help.
This is the best price, best quality that I've found.
I use between 4 oz - 8 oz. a month. You'll need to also order a dropper lid for the bottle size you order.
This is orange so care is needed. Will wash out of clothes of attended to immediately with a spot hand wash.
It may or may not stain teeth - I take so many other very dark herbal powders, eat dark berries, turmeric, etc. that my teeth are not at white as I'd like. But the fight is to KEEP all my teeth with terribly receding gums.
AVOID ALL TOOTH WHITENING PRODUCTS. All. They can destroy the lining to the mucus membrane in the mouth and cause sensitivity or pain. -
Posted by Keebler (Member # 12673) on :
About Neuropathic Facial Pain and TN (Trigeminal Neuralgia)
The trigeminal nerve innervates a portion of the scalp, the face, nose, inside the nose, lips, inside the mouth, part of the tongue, and every tooth in the mouth . . .
= = = = = = = = = = = = = = = =
Google: trigeminal nerve, borrelia -
Posted by Keebler (Member # 12673) on :
- Endocrine dysfunction that often goes with lyme can contribute both to dry mouth and to burning mouth. Adrenal support is vital. So is good sleep -
- but be aware that many pharmaceutical sleep drugs (and other Rx, too) cause dry mouth and that can cause burning mouth and all kinds of other gum & dental disasters.
Holy Basil (Tulsi) tincture works very well. More detail here:
Endocrine Disruptor -
Posted by Keebler (Member # 12673) on :
- PROBIOTICS of the best quality. Take in capsule form to get into the gut, but also open one up in your mouth and just let sit there for while a couple times a day.
Keep separate by a couple hours from antibiotics and from most herbs.
Other anti-candida measures. Seagate brand Olive Leaf Extract is my favorite.
I assume you are on a healthful diet, free of all processed foods, all food additives and dyes, all colas or fizzy drinks,
Avoiding dairy and gluten is also very helpful, indeed.
If new to all this, it sounds like a lot. You have here stuff I've collected over years of trying to find relief. It all matters. But most important:
have a good LLMD &/or a LL ND. One who is ILADS-educated. Be sure they know of this symptom as it can be very intense and painful, indeed.
I hope that you find quick relief. -
Posted by Keebler (Member # 12673) on :
Really? Never Brush Your Teeth Immediately After a Meal Really? [Yes, indeed! Do not.]
By ANAHAD O'CONNOR � The New York Times - | May 21, 2012
Excerpts:
. . . research shows that brushing too soon after meals and drinks, especially those that are acidic, can do more harm than good.
Acid reflux poses a similar problem: While it might seem like a good idea to brush after a reflux episode, doing so can damage your teeth.
Acid attacks the teeth, eroding enamel and the layer below it, called dentin. Brushing can accelerate this process, said Dr. Howard R. Gamble, president of the Academy of General Dentistry.
�With brushing, you could actually push the acid deeper into the enamel and the dentin,� he said.
. . . �It is concluded that for protection of dentin surfaces,� the authors wrote, �at least 30 minutes should elapse before tooth brushing after an erosive attack.�
In the meantime, to get rid of acid, Dr. Gamble suggested rinsing the mouth out with water or using an acid-neutralizing mixture: one part baking soda, eight parts water.
THE BOTTOM LINE
Never brush immediately after an acidic meal or drink. Always wait at least 30 minutes. -
[ 07-30-2014, 01:18 AM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
- For many with lyme, going on a strict gluten-free diet is essential. For anyone with burning mouth, IMO, the same is a good idea.
= = = = = = = = = = =
First. these things can contribute to burning mouth:
Gluten (in wheat, rye, barley, spelt, kamut and added to "Mexican" or "Spanish" rice and other flavor packets - and in many processed foods even broths in the form or barley malt);
HIDDEN SOURCES OF GLUTEN (each link has detail the others may not):
7-page pdf -
Posted by Keebler (Member # 12673) on :
- Dairy makes my mouth worse. You might test out for yourself, too. Dairy can cause heartburn. It follows, then, that it can also contribute to burning mouth.
Sidebar: When a lifetime of suffering, medical visits and prescription drugs can be resolved with a not especially challenging dietary change, a certain amount of retroactive frustration seems justifiable.
Not surprisingly, experiences like mine with dairy, outlined in my column of two weeks ago, are more common than unusual, at least according to the roughly 1,300 comments and e-mails we received since then.
In them, people outlined their experiences with dairy and health problems as varied as heartburn, migraines, irritable bowel syndrome, colitis, eczema, acne, hives, asthma (�When I gave up dairy, my asthma went away completely�),
gall bladder issues, body aches, ear infections, colic, �seasonal allergies,� rhinitis, chronic sinus infections and more.
(One writer mentioned an absence of canker sores after cutting dairy; I realized I hadn�t had a canker sore � which I�ve gotten an average of once a month my whole life � in four months. Something else to think about.)
[ 07-27-2012, 04:43 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
- I see that you just posted in "Seeking a doctor" for a LLMD.
As it can take a while before you get into to see one, you might consider either of these to help calm the burning mouth. But - for either one - you should ask the LLMD if taking these before you might get any lyme or infection tests would be okay.
For sure, Probiotics, and Sea Buckthorn Oil will not interfer with testing. However, some herbs with anti-infective properties might.
[ 07-27-2012, 08:20 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
- One more post and I think that's all I've got in my files or memory about this. Hopefully, others will have more suggestions.
While at home and before bed, the Sea Buckthorn Oil is all I need to keep mouth moist and comfortable, when you are out and about, CANKERMELTS can be a miracle.
The same company also makes this product that should work well. It's clear so that is helpful:
Be sure to get the mint free (as mint often burns): -----
Nutribiotic Grapefruit Seed Extract Liquid Concentrate � 2 oz. $14. -
Posted by Keebler (Member # 12673) on :
- To other posters: please feel free to add to this. I've posted so much only because of the intense pain this has caused me and what I've found along the way.
But this is not all there is to know about burning mouth so I look forward to hearing of what others have found out in their search, too.
I know I've read in past threads of those who had this and it cleared with lyme treatment.
But, just searching past threads now, I seen none that are headlined as "burning mouth" - I just remember seeing some posts as passing thoughts in other threads, I guess. -
Posted by Keebler (Member # 12673) on :
- Oh, no! One more afterthought: LIP BALM or anything else you might use on your lips (may not cause but) can contribute to burning mouth.
My lips have also been affected and they dry so fast and then burn. After trying dozens of different lip balms, this is one that lasts the longest and is the most soothing:
� No petroleum, artificial colors, flavors, or sweeteners.
. . . Badger does not use any gluten or gluten-derived ingredients at our facility in New Hampshire, so our balms, . . . are filled on machinery that has not processed gluten materials.
However, Badger is not a certified gluten-free facility, so there cannot be a 100% guarantee. . . . (more details at their site). -
Posted by Keebler (Member # 12673) on :
- And the thoughts just keep coming:
You should be assessed for h.Pylori -
Helicobacter pylori can cause burning mouth just as it can cause stomach burning and ulcers.
[ 07-27-2012, 05:42 PM: Message edited by: Keebler ]
Posted by Razzle (Member # 30398) on :
Vitamin B12 deficiency is a possibility...as is oral thrush.
Posted by Keebler (Member # 12673) on :
- Good point by Razzle about B-12. Be sure to get sublingual as it needs to be absorbed in the mouth.
Came back to add that I assume you've seen a doctor to who will examine the tissue in your mouth and offer explanations and suggestions.
But avoid steroids. They can make lyme and other infection much worse.
If you have HPV (human papillomavirus), you would want to know which strain that would be as some strains have been linked to oral cancer.
Antivirals would be in order - &/or other approaches to address HPV - or other possible viruses, too.
Various Medical MUSHROOMS can be a very nice support to the immune system when it's overwhelmed with any infection. Cordyceps is a good start. -
Posted by terv (Member # 29410) on :
Second the b12. How are your iron levels? I have hemochromatosis which is treated by phlebotomies. When the were taking blood out of me at too fast a rate I got this.
B12 is somehow used to make more blood.
Posted by Razzle (Member # 30398) on :
B12 is needed to make hemoglobin.
Posted by randibear (Member # 11290) on :
Oil pulling with coconut oil.helped me a lot.
Posted by desertwind (Member # 25256) on :
I have had this many time. For me it is typically yeast related and clears with Diflucan.
Sometimes hormones and dry mouth from certain meds cause it as well.
Posted by Limeaid (Member # 22357) on :
My Mom suffers from BMS, she does not have lyme. Mayo is currently doing a study and contacted her to ask if she would like to be a part of it. She traveled to Mayo and met with a few doctors and a group of several other patients who have BMS over a few days. She is now on a mixture of tabasco and klonipin. Weird, I know! From the first dose it relieved her symptoms. She has been suffering from it constantly for about 4 years.
Posted by randibear (Member # 11290) on :
Oil pulling with coconut oil.helped me a lot.
Posted by Keebler (Member # 12673) on :
- Limeaid,
can you say how that was administered?
Tabasco (which is liquid, not in any gel caps that I know of) would remove whatever tissue I still have left in my mouth. Cayenne - in a CAPSULE - might be an similar idea but I would sure urge anyone with tender tissue not to put in the mouth anything that could burn it.
There can be many different causes of burning mouth. For many with lyme, it is lyme related. Other spirochetes, and viruses, can also be behind this.
For some, hormones. -
Posted by Limeaid (Member # 22357) on :
Hi Keebler, It is in the liquid form, but it is diluted. I
will ask my mom how much. My Mom had a
gastrectomy back in the 80's that caused a
lot of long-standing issues, so I always thought
it came from the gut. Mayo believes it is
an neuropathic problem. It seems to make sense.
Also, they are finding it is more common in
woman than men.
Posted by iluvrain (Member # 40055) on :
Limeaid..did your mom have pain in her teeth? A paghologist told me that my symptoms are sort of like bms but more severe.
Posted by Keebler (Member # 12673) on :
The Silent Saboteurs: Unmasking Our Own Oral Spirochetes As The Key To Saving TRILLIONS in Health Care Costs
-by William D. Nordquist, BS, DMD, MS
& David J. Krutchkoff, DDS, MS
236 Pages, $25.95
--------------------- Type the names of either author in the book section at Amazon to see their other titles and reader reviews.
You can also LOOK INSIDE some of their books -
Posted by Limeaid (Member # 22357) on :
Hi iluvrain, I'm pretty sure she never complained of pain in her teeth.
Posted by C.P. (Member # 38378) on :
Here's an article that explains the connection between Lyme and mouth problems. My LL doctor in Boulder recommended I read it.
Lyhttp://www.ilads.org/lyme_research/lyme_publications14.htmlme
Posted by Keebler (Member # 12673) on :
- Some letters got mixed in with that link that C.P. posted above. This should connect. The mouth is part of the GI system - and this also speaks to the cranial nerve involvement of the mouth:
"Bell's Palsy of the Gut" and other GI Manifestations of Lyme and Associated Diseases -
Posted by Suebear (Member # 42596) on :
I have had BMS since 2007. I was treated for PTSD with xanax and clonapin. Both of these took a way my BMS and also most of the tingling and numbness in my arms and hands. I was just diagnosed with lyme disease, so I don't know how the xanax (which I am currently taking affects lyme yet). I will say that it has greatly helped the BMS.
Posted by Keebler (Member # 12673) on :
- I've been using Berberine for quite some time now.
My mouth still has a long way to go (wish I could get some tissue back around my teeth) . . . but it was wall to wall ulcers and burning all the time . . . yet, now, is SO much better, consistently.
I still use Sea Buckthorn oil at night and some days if I've eaten something too strong.
Green Tea by day may also be part of the improvement. My sense is that Berberine is the main key for me:
BERBERINE – LINKS SET -
Posted by randibear (Member # 11290) on :
also check your toothpaste. crest total causes horrible mouth pain for me. I can only use colgate plain.
Posted by kmarie31 (Member # 43700) on :
I've experienced Burning Mouth Syndrome symptoms (diagnosed by an ENT physician a couple years ago). I had no idea it was related to Lyme!
I've found that it's triggered by certain foods (for me, anyway). It's way better now that I've cut refined sugar from my diet. It always seemed to be triggered by sweets and citrus. Also, acidic foods/drinks such as coffee.
I've only had it now a couple of times in recent months - when I've had sugar.
Hope it improves for you!
Posted by Keebler (Member # 12673) on :
- This has helped me a lot, and this can be held in mouth for quite a while. No alcohol.
also at www.vitacost.com and Amazon, I think -
Posted by Keebler (Member # 12673) on :
- Oh, no . . . just realized there is not a lot here about toothpaste ingredients to avoid (though earlier I did post the one that does not burn for me)
Avoid Sodium Laurel Sulfate (and similar)
SLS is a common ingredient in many toothpastes as are dyes, additives, specks. Even Tom's of Maine is not a good choice as some of their offerings are not so kind to a burning mouth.
Avoid mint and cinnamon. They burn. -
Posted by Keebler (Member # 12673) on :
- KarlaL posted this excellent article just last week. It took me no time to find connection to mouth tissue. Yikes. But good to know.
page one: . . . Evidence of Bartonella quintana has been found in the dental pulp (of Napoleon's soldiers). . . .
page 2:
Some believe that devitalized teeth and jawbone cavitations may be associated with Bartonella infection . . . .
. . . very high incidence of root canals in his practice which may be related to a compromise of small blood vessels that feed the dental pulp . . . . -
Posted by Keebler (Member # 12673) on :
- These little licorice pellets are soothing to mouth tissue - that is after they start to melt just a bit.
Fluoroquinolone cautions - Links set -
Posted by sammy (Member # 13952) on :
I have this problem with toothpastes only. It is horrible!
Avoid cocamidopropyl beatine along with Sodium Laurel Sulfates (and similar products as some are called "natural"). These seem to be reoccurring offenders. There may be others that cause the burning but I haven't figured them out.
I've spent so much money trying to find a toothpaste that doesn't burn my tongue and mouth, it's ridiculous!
I currently use "Toms" natural toothpaste for children called "Silly Strawberry with Flouride.
I use children's Act Flouride rinse alternating with Crest Prohealth (purple bottle only) mouth wash every night.
Posted by Lymetoo (Member # 743) on :
Sammy .. Have you tried the PLAIN toothpaste from Cleure?
Posted by Keebler (Member # 12673) on :
Olive Leaf Extract as a New Topical Management for Oral Mucositis Following Chemotherapy: A Microbiological Examination, Experimental Animal Study and Clinical Trial