BMS - Burning Mouth and Tongue (Burning Mouth Syndrome?)

• By Maglets
• Reply 3750792
• January 28, 2013 at 11:21 pm
• Report post

Hi, I have Sjogrens along with FMD and the Sjogrens dries up everything including your mouth. Have you tried Biotene products? Chewing gum seems to help but along with the GERD and everything my tongue gets affected. I wonder if something like rinsing with baking soda or something might help with the acidity levels. Hope this helps.

• Reply

• By suzbeceri
• Reply 3754458
• January 30, 2013 at 12:15 am
• Report post

I have had BMS for the past 5 1/2 years. I have had every test done and been to see specialists across the country. Unfortunately, I was told there is no cure. The only thing I do is take 2nd clonazapam every day and chew gum constantly. Also, biotine has a mouth spray now, but these are not cures just bandaids for the problem. It has been a nightmare and I wouldn't want to wish this on my worst enemy. I have been researching the problem for as long as I have had it and saw the best Dr. In the country for this at the university of Kentucky. He and his previous mentor have been studying it for years and there are huge medical conferences that take place internationally to try and address this specific issue. For now, I take the clonazapam and chew a lot of gum. To sleep I have to take either ambien or lunesta because the pain is so bad at night especially. I wish I could give you better news, but just try and get through it. Every day will be a challenge, but you can do it!

• Reply

• By catpurr
• Reply 3767551
• February 2, 2013 at 6:27 pm
• Report post

thisdogdonthunt,
So sorry you are going through this. Although I dont have the condition,I know all too well the frustrations that come with "not knowing" all while suffering. I have mastocytosis. I read recently (cant remember where though!) I will try and find it. That Burning Mouth Syndrome is suspected to be a Mast cell disorder(there are many variations). I dont know if youve ever had a serum tryptase blood test (measures histamine),which tells alot about Mast cell conditions. If youre not familiar with the disease at all,its like having allergic reactions inside and out."Flushing" is one of my main symptoms. Its not wet. If Ive come in contact with something Im sensitive to,ex. foods,dyes in stores,fragrances etc. I flush. It feels like the second layer of skin is literally on fire. I sometimes feel like I have an internal heater that is stuck on high that I cant control. It either causes me to freeze and have to get in the tub with warm water and then to bed(several times a day) or feel like Im going to go up in flames. I lay on the garage floor on a sheet in 30 degree weather for 45 min. before I felt cool enough to come inside. Mine is confined to the GI tract so i have so many problems in that area.(as well as other symptoms that come with a flare) Pain,IBS,spasm,GERD, and eventually Gallbladder surgery. I would just encourage you to read about me ,and some of my posts. It might give you some insight? Ive learned that you literally HAVE to be your own advocate. Read,Read,and Research. There is so much support here. In the meantime I will try and find the article I mentioned.
Healthy blessings To You!!! : ))

• Reply

• By josie75
• Reply 3768571
• February 3, 2013 at 7:08 am
• Report post

Hi. Thisdogdonthunt .

i think you should look into mast cell conditions as you have several symptoms . i have a site www.iamast.com . you need testing for systemic madtocytosis .yohll see details on my tests page xx id like to talk to you in depth to see how i can help xx many many huggles jose

• Reply

• By mssherrie
• Reply 3775007
• February 5, 2013 at 6:04 am
• Report post

I have alot of weird things...this is one of them and I kind of think it is connected to a rare fungal infection in my larynx. I finally got that diagnosed at Mayo's lab...took 8 weeks to grow it out.. it is called Exophilia /waggilia or close to that. You can google the first name and it will come up with a lot of sub groups.....I get it in cycles...yes...the worst part of the burn is at the top end of the tongue..it burns all over inside the mouth.. almost any kind of food hurts..and anything with vinegar in it.. or spice is awful.. my taste gets so off..catsup is horrid... mustard is not even doable...salad dressing.. seasoning of any kind. just bland things ...and vanilla ice cream of frozen yogurt is ok. When it quits.. it is gone in a matter of minutes. I have not kept a diary to see the span of time while it is active or inactive. I actually get blisters in the lower inside lip and along the sides of the tongue. It is heavenly when it quits.. and hell when it is active. It may NOT be related to the fungal infection in my throat and larynx... that produces a horrid cough... and I get up a thick , mucus that clogs the larynx and the voice goes away till I can get it hacked up. NOT coming from the nasal area... that is always clear as water if I get a bit of nose drip. Was hoping I would find some clues here. Not a lot of description and the remedies are NOT what would do me any good...this is BURNING...like a blow torch....will keep reading !!!

• Reply

• By Loimmarmar
• Reply 3776651
• February 5, 2013 at 3:11 pm
• Report post

Hello all,
I have read all posts here, now for the ?s...could it be candidiasis? That is a fungal and the clozapine troch that is sucked not chewed, that is the generic for mycelex. That only worked for first several years, now because it is a systemic condition that has cascade effects it gets complicated. Does it ever look like a white coat is on tongue?...I now use nystatin liquid as that also cleans canadia from blood bowels and liver. ....now what caused the symptoms....in the first place....was there any type of EXPOSURE?, to chemicals, pesticides, mold, bird poop, natural gas, sick building, paints, polyurethane , asbestos, ink in printing, in say the last year BEFORE symptoms appeared?
I know of these sceneros quite well as I have lived it for the last years....16......the drs do not know everything, they need us to teach them....MCS. MULTIPLE CHEMICAL SENSITIVITIES,......CI. CHEMICALLY INJURED... The symptoms arise for me ALL THE TIME and is partially named petrol chemical toxicity, however that does not cover the brain bleed, weird blood, Graves' disease, skin lesions similar to flesh eating bacteria, high bp, and others, so many to type here...every time I am around anything of a chemical nature, I show symptoms ranging from all you all wrote of and more and then it takes DAYS to recoupe....I'll write more later. I have website also...
www.help4you.iwarp.com. GOD BLESS you all.....

• Reply

• By mssherrie
• Reply 3778380 · In reply to 3776651 by Loimmarmar
• February 6, 2013 at 2:59 am
• Report post

good post, and i tend to believe it is probably a fungal or yeast issue...I do not have the white on my tongue but did years ago whtn I had Chronic Fatigue Syndrome very bad... now the ENT man said deep in throat was white cheesy looking stuff.. he took swab..and I had two active "things" going on.. yes.. one was the candidia yeast and the other was the Exophilia sp? Waggiela sp...the candidia was easy to kill..the other is impossible.. it may be that the candidia in some other form is back..I don't remember having the burning last time, but sure have it now. Also some times the stuff I cough up has the NASTIEST taste EVER... makes ME sick.. no odor.. detected but the horrible taste... bout makes me sick myself...got to get it fixed... for the other business Exo... I was taking Itraconzole ... it helped some, but not unless I took it all the time. thanks...do not think this is from chemicals... too much and no idea what to even start with. Since I am also battling ovarian cancer, something called CRPS in left foot and very bad arthritis in spine and hands... it is about too much to have this other stuff. I had it BEFORE the cancer, so no relationship to chemo...

• Reply

• By Loimmarmar
• Reply 3778687
• February 6, 2013 at 8:16 am
• Report post

Hi again, candidiasis is a fungal yeast infection and you are right about the white, they call it a white coat cause it looks like it especially in the beginning. It then changes over time and becomes systemic and cascade effect. After reading all the above....I know it was an exposure that was cause of almost all you mentioned so far....I have shown symptoms of fibromyalgia for 26years so I understand the chronic fatigue symptoms as the two are almost exact in symptoms. I had a bout with cervical cancer 14 years ago. Please visit my website and see if you see yourself there. I know that I know that an exposure was the causation for the cascade effects of ills. My # is listed...sometimes it takes speaking in person to someone else who lived similar symptoms in order to get to root...the dr who has not lived it and only looks at test results that are weird but they have no explanation for it, as in....I know the taste you wrote of...have you ever had any lung conditions diagnosed, yea I know, like you don't have enough to deal with. I will add you in my Prayer time,...
If it is not a chemical exposure that caused say the chronic fatigue with the cascade effect think about mold. What does your way of eating consist of? I am 55 now and today 16 years ago, I took myself off life support, I had been on it for 6 days and pulled the tube out cause they were late with morphine shot that kept me knocked out. I am alive and just want to help others. GOD BLESS, have a wonderful Blessed day.

• Reply

• By thisdogdonthunt
• Reply 3779529
• February 6, 2013 at 12:06 pm
• Report post

Thanks everyone...the symptoms sure mirror BMS...weirdly came on after I had a serious episodic, intense bit of anxiety more than 8 months ago after a medical scare. Before May of this year I didn't have an inkling of any of this going on...my attitude and happiness quotient, confidence was stellar; life was grand. I did, however, looking back have some issues with my throat on occasion, my digestion was always strange and unpredictable (but I had created many workarounds for it), and I admit I do recall ONE single incidence in which I did notice a weird tongue burning sensation suddenly while driving one day more than a year ago; it was more of an annoyance than anything, then quickly went away and didn't come back until June of this year - after I suffered some severe anxiety over something I'll share later- may or may not have anything to do with it. The BMS might have come on with or without the anxiety attack.

Bottom line, it IS one of the most miserable symptoms I have to date. I had my gall bladder removed in July; had atrocious digestive issues and anxiety from that as well; but my "bathroom" issues seemed to settle down (it's been 7 months since the surgery) and have become more normal, aside from routine stomach upsets, and reactions to certain foods, that seem to be tied to this horrific tongue/mouth/taste disorder Hell.
Maglets: I have seen a rheumatologist; had blood work done in October of 2012 - Halloween to be exact (how fitting!), and nothing showed up. ANA negative. At the time I'd been diagnosed with esophageal aperistalsis; my esophagus muscles weren't working AT ALL during that test (esophageal manometry) with GI doc reading the test as no motility; no food moving down aside from gravity and water/liquids. Strangely though I had no knowledge of this, nor did he know how long this had been going on. I also could eat solid foods; nothing came back up. It did seem like food was sticking in my throat and I seemed to need more liquids; but at the time I didn't give it a second thought before the diagnosis. He thought the paralyzed esophagus muscles might be due to something auto immune related; my lower schincter muscles (LES) seemed to be working normally on the tesft - which is the opposite of most esophagus issues - which have an over active LES causing food to come back up and serious spasms of the esophagus. So he suspicioned scleroderma (systemic) so I went to a rheumatologist to help figure that out. But when the bloodwork came back negative they couldn't confirm scleroderma. I have been told a negative auto immune blood test still doesn't rule out an auto immune disorder, even scleroderma.

Since then I've changed GI docs - again (last one gave up had nothing else to try) at a local teaching hospital. I repeated the manometry again and this time - oddly - the test results came back as "mildly" paralyzed muscles; during the second test (which occurred in December) my esophagus muscles were contracting some. So I guess that's some good news. Still...talk about confusing. At this point I don't know WHICH test results to believe. I'm still miserable and can't eat many of the foods I used to love, after eating ANYTHING my mouth and tongue - as well as my abdomen and stomach - are atrocious. Some days are better than others.

I've been suffering from severe insomnia since all of this started - but admittedly I've always been a light sleeper and night owl. Just never worried about not getting much sleep and was a coffee-aholic which kept me going. Now I can hardly drink a drop of coffee without severe mouth/tongue/stomach/abdomen Hell...something I miss terribly. I've been off and on a series of different anti depressants - also something I never touched in my life until this year. I hate, hate, hate prescription meds; my body has always reacted badly to any I've been forced to take, especially antibiotics. And in this case many of the anti depressants. I also admit I don't take many of these very long; something doctors hate about me as a patient. If something doesn't work right away I stop. Bad in some cases, a lifesaver in others. Such a turmoil.

Maglets: It's been suggested I might have Sjogrens as well...the Biotene products do produce more saliva for me but only helps for about a minute, tops and doesn't touch the tongue tingling or burn at all... medicines that seem to provide such little relief seem pointless to me. I've been using baking soda when brushing teeth and tongue but it, too,only provides a few seconds of relief, leaving a very salty taste on my tongue. In seconds the tingling, bad taste, burn comes roaring back. I'm wondering if I don't have dry mouth - just not sure how to gauge that with everything else going on with my tongue and mouth. I do have dry eyes; have been told that for years...also lately very, very dry nostrils, I rarely have a runny nose anymore _ (this, too, only started when all this other stuff happened to me this summer!) extremely dry lips which I've had for years. Do you have a bad taste in your mouth and does your tongue seem to be tingling all the time; like runaway nerve endings always going crazy? I've finally realized this sensation seems to be brought on when my tongue nerve endings go crazy; that's when the feeling intensifies and starts burning and causing an awful taste on my tongue and in my throat.

For a while doctors insisted I had GERD - I may have it - but a ph monitoring test indicated I didn't have significant acid or non-acid (bile) coming up into my esophagus. I was taking Protonix for months, a PPI to suppress acid, didn't have any change with the tongue/mouth burning/discomfort at all. It did seem to have some impact on my stomach but I'm not sure it was a positive impact now that I look back on it. I've stopped taking Protonix and no longer take any acid suppressing meds.

I seem to have so many things going on that it's so hard to know what to take for what; what is causing what. Doctors aren't much help anymore...or maybe I've just lost so much faith in them that I can't believe anything they tell me, which is a problem as well since I may be wrong and they may be right...

• Reply

• By thisdogdonthunt
• Reply 3779624
• February 6, 2013 at 12:29 pm
• Report post

Suzceben: my neurologist prescribed a subliminal Clonazapam (isn't that also called Klonopin?) based upon a trial out there experts were exploring that combined Neurotin (Gabapentin) and low dose Klonopin. With some success, but only 40-50% had any relief. Does the Clonazapam help the tongue burning?

• Reply

• By catpurr
• Reply 3779665
• February 6, 2013 at 12:43 pm
• Report post

Loimmarmar, and mssherrie,
Bless your hearts! You both have been through alot! Loimmarmar,I went to you website an took a look.Wow! So glad you made it through. Although, its still a daily struggle. I think its really great. There are so many ppl out there struggling with weird things/symptoms and are at a loss as well as their Dr.s. Having someone who understands first hand and being able to talk to them is such a great comfort and support! As far as chemicals go, I know they play a big part in these diseases and conditions. I was a very successful hairstylist for 27 yrs. Sadly I had to give that up,sell my business and just walk away. For about a year I was having symptoms that just progressively got worse. Flushing,bp problems,terrible stomach pain,IBS,GERD,tingling/numbness in extremities,hives,vomiting several times a day,fainting then all out anaphylaxis.(All symptoms of Mastocytosis)I think my body had just had enough! I do have a history of some other med.problems before these. In 01' it was suspected that i had MS due to elevated proteins in my spinal fluid and obvious physical symptoms. Turns out it was Transverse Myelitis(Inflammation in the spinal column). I also was born with a very rare "tethered cord". All my life have had tonsil problems. The white stuff that you see in the back could be tonsil stones. I have those. They are common. Just this past year,started having problems with a wacky thyroid too.In doing some of my own research, so many of these things are related somehow. I do realize that everybody is different and dont all have the same conditions/symptoms. For all of those Ive met over the last 3 yrs.or so,there are no 2 of us just alike. I think Ive had every test known to man. In and out of the hospital,Dr after Dr. Blah Blah Blah. You get it...Although I dont have the tongue thing. Alot of ppl with Mast cell conditions do. Some even have a chronic condition/symptom called "Geographic tongue" and some do describe it as very painful. Histamine is our bodys alarm to intruders.Our Bodys natural way to fight. Mast cells release it along with a list of other nasty chemicals. For those of us with Mastocytosis;we have too many mast cells,therefore when we encounter a threat (chemicals,smells.foods,toxins,stress,a sting,even motion changes) The abundance of mast cells release the nasty chemicals that cause the cascade of symptoms(up to anaphylaxis and worse) that can last for hours or even days.For those who,through tests dont meet the criteria of Mastocytosis fall in the Mast cell disorder category=their normal mast cell count just behaves badly. I hope that you take the time to go to Josies website and take a look. She is a retired nurse in the UK who is just a wealth of knowledge about these conditions. I just know that MCS is not recognized in the medical community as a "Real diagnosis"(these were my very own Dr.s words) and NO hes not my Dr. now.lol. Too much work. I was always doing the research and approaching him with new ideas and meds to try and help me! He was not interested in learning more. He was very rude and spineless in the end. Its so sad, but true with so many of us. Just always feeling lost,like we have no one on our side as far as the Med community. Thanks to a better med regimen Im doing better these days. I cant say that I ever have a symptom free day,but Im happy for the little bits of time in my day when I dont.Ive had to get use to the fact that alot of my time has to be spent in bed. I live in the moment,count my blessings and am forever hopeful that there will be a cure very soon! I hope this post finds you well today!
Healthy Blessings To You!!!
: ))

• Reply

• By catpurr
• Reply 3779711
• February 6, 2013 at 1:01 pm
• Report post

P.S!,
Sorry, just found the link I metioned to thisdogdonthunt in a previous post,about "Burning Mouth Syndrome"being a Mast cell condition. As soon as i finished writing the above post,I had a friend request from someome who has Burning mouth Syndrome and under it was a post from Kazza 75 with the article.It came from a conference with Dr.Afrin, a Mastocytosis specialist in Canada. Its info@mastocytosis.ca,it starts on page 20. Here is the link: http://www.mastocytosis.ca/2011%20MSC%20Medical%20Lecture%20without%20slide s.pdf

• Reply

• By josie75
• Reply 3780050 · In reply to 3779529 by thisdogdonthunt
• February 6, 2013 at 2:45 pm
• Report post

Hi Thisdogdonthunt xx

i strongly advise you read my website on mast cell conditions .you describe a lot of issues encountered . Symptoms with foods , oesophegus issues with spasms or no activity .

Those of us with rare conditions go round the houses medically because we don't fit into an established box.MCAD is increasing in doctors awareness but has a way to go .id like to get you to a mast cell GI to begin as its your digestion which is your main issue just now .What state are you in ?

Autoimmune conditions -like sjorns can add into mast cell conditions .

Meds can be hard when you are so in need of help xx and i hear you that stopping has saved you in some situations xx I do think you trailing meds used for mast cells and to control the chemicals released xx but this must be done with care due to your previous experiences . The more I know about meds that haven't suited you and foods which dont the more safe this process can be .

Im glad you dont use standard toothpaste its full of junk that will bother you xx

Dry eyes,yes can be sjorns but is also sen in mast cell conditons .have you tried any eye drops ?

huggles
Jose

• Reply

• By Loimmarmar
• Reply 3780137
• February 6, 2013 at 3:12 pm
• Report post

Everyone, For me when I saw the long posts I did the lol, lol LOL, LOL. Someone who writes like I as far as length. I had someone write that their eyes were bleeding from all the reading...now ... Mentioned was being a hairdresser for 27 years...... From my knowledge, that was the OVERLOAD that caused the body to have the build up. Once the build up happens, something triggers it to activate badly, you were driving. Newer car? Congested highway or freeway type area? Close to malls, trucks or past plants that use chemicals. I do know about the dr things you spoke of and you are right, They do not LIVE IT, and the testing does not always reflect the body's happenings. I will go to the website and read, PLEASE, be prepared for a longer response than now. There are two environmental drs in states. As for the histamine, that is what happens..... When I went to one of those drs... I was given a shot of histamine, It STOPPED the reactions right away like an epipen. I inquired as to how and why... It tricks our bodies into not releasing histamine and is on a completely different level than anti histamine, and much better. My enviro dr wrote in black and white that it was the natural gas leak in my apartment that caused respiratory conditions. Later Hershey said that vocal cord dysfunction was reason for problems with swallowing liquids and inability to have air in the air, they were spasing out. Hum or sing to stop it, two years now of singing and humming when nebulizer ineffective. I know that the initial injury was the gas and then the cascade. 16 years later I'm still looking for a name of the whole package. I counted one day and there have been 136 symptoms and conditions related to the exposure, I do need to add a few more that are new as of late. I am told by many drs that not getting DNA from blood is impossible..... Then why did that happen to me 2 times? I am not alien, at least, not that I know of... LOL. You all have a wonderful Blessed day, GOD BLESS!!!

• Reply

• By suzbeceri
• Reply 3781480
• February 6, 2013 at 11:31 pm
• Report post

thisdogdonthunt: I have been taking Klonopin "Clonazepam" 2 mg and it helps calm me down, as I have a huge anxiety component to this. I also tried Gabapentin and probably everything else under the sun but now try and stick with the regular routine. I think having a regular routine has psychologically helped me, as I don't have any control over my BMS but I can control my daily routine. If I didn't have gum to chew I would probably not be here anymore. I don't let the pain get intense, as if I don't have gum, I wouldn't make it through the day. Even if I stick it to the top of my pallette when I am in a meeting or something it doesn't burn. But if I don't have the gum I would lose my mind! I also have horrible stomach issues. I am not overweight (could lose 20) but I have an umbilical hernia, hiatal hernia, gastritis, and GERD. Before all of this happened I noticed some slight GERD but it came on suddenly and hasn't stopped yet. Has anyone out there heard of any new trials being done or any type of progress being done on BMS? I drove myself crazy for the first 2 years of this looking for help or a cure and I found nothing, have been to every type of Dr. under the sun, and there is nothing out there. So if I am missing something, please let me know. I am getting ready to move to Denver from the East coast but I will keep checking this post. God bless everyone who is dealing with any type of illness :o)

• Reply

• By thisdogdonthunt
• Reply 3783420
• February 7, 2013 at 2:30 pm
• Report post

thank you catpurr...is the serum tryptase blood test a commonly conducted one? I suspect not...what kind of physician would order this for me? I'll look through my extensive listing of blood tests I've had run on me in the past 8 months; this one does not sound familiar. Frankly, I've never felt I had much in the way of allergic reactions to anything; until NOW...and I mean recently. Everything seems post-gall bladder surgery; post illness in May; post anxiety attack that came on from the illness this summer...never before any of these events. Other than some simple, routine sniffles from pollen. But now...OMG...I feel absolutely horrible all the time; I keep feeling as if I'm allergic to myself! I don't swell, but I sneeze for no good reason, I'm cold most of the time with chills that aren't accompanied by fever; I'm so lethargic, my brain feels foggy ALL of the time; my digestive system is a wreck (but I've always had some issues with this made worse by not having a gall bladder). And the overall tingling sensations; hands, feet, head (which sometimes feels like electrodes are being turned off and on all the time - especially when I try to lie down at night to sleep), legs (mostly left side) body, buttocks (mostly left side), but often entire body is in turmoil, light shaking sensation, tingling all over, like I'm coming unglued...I know that sounds awful! It's so bizzarre...I wish I could explain it better. At times I think I'm going nuts...but it seems to worsen with the Gawd awful tongue burning...it's constant tingling but accompanied by a burning sensation with a metallic taste - a taste that I've never experienced in my life. My tongue is forever moving, I can see it in the mirror - nerves for sure...

I had this sensation come and go in June; before the gall bladder surgery, but has just progressively gotten worse and worse...typical BMS - not as bad in the morning (providing I can find the right sleep med or situation to help me fall asleep), then worsens by the hour reaching a crescendo by evening and by bedtime I'm a wreck...I want to jump off a bridge it's so bad! I'm not one to take pain medications due to so many reasons -

It is so hard to concentrate on anything; and it's an 'invisible' disease; I look OK on the outside but dying a slow physical death on the inside...

• Reply

• By catpurr
• Reply 3784151
• February 7, 2013 at 6:40 pm
• Report post

thisdogdonthunt,
The Serum Tryptase is a blood test that measures histamine in the blood. It is usually the very first test that is done when Mastocytosis or any other Mast cell disorder is suspected. If it is elevated,its a pretty good indicator of the disease. Some ppl with MCAD(Mast Cell activation disorder) may not have an elevated tryptase,or even too many mast cells,just mast cells that behave badly for reasons unknown sometimes. Sometimes the test will accompany a 24 hr. urine. When there are many indicators the next test would be a Bone Marrow biopsy,to check for certain mutations that would put that individual in the correct Masto category in order for proper treatment.(Thank God I dont have the mutation) and of course I had biopsys of my stomach/GI tract. There are different variations of the disease,so the Med. regimens will obviously vary. Usually an Allergist/Immunologist ( And GI also in my case bc my masto is confined to the GI tract). As far as your symptoms I can tell you I have/do experience the same things,with probably a few different ones mainly flushing(very common with most of us) Daily GI distress (often feels like hot crushed glass in my stomach(inflammation). I do swell and the weirdest thing is;The left side of my body has always felt different than the right! Nobody understands this nor can explain it. I hope you had a chance to read the publication I put the link to earlier. You may be interested to read the whole thing and not just start on pg.20(Burning Mouth Syndrome)Idk? I so get the inside/outside thing! That makes it hard for ppl. You know Benadryl is sometimes used as a sleep aid,but it is also a Histamine blocker that is a lifesaver for us "masto'ers". Have you thought about that? I know Im not a Dr.,but that is commonly used for allergies. It may help with the symptoms and help you sleep. If your like me,when Im feeling so horrible,I would eat a bug if I thought it would help! I hope some of this has helped. I really hope you will start to get answers too. You really do have to be your own advocate. Sometimes that means making suggestions and asking for certain tests. Just know you have alot of support here and let me know if you need anything!
: ))

• Reply

• By Loimmarmar
• Reply 3784192
• February 7, 2013 at 6:54 pm
• Report post

thisdogdonthunt.... You might think this a broken record.... I know what I know.... You are being toxed right before the burning mouth starts, and the exposure may be VERY BRIEF, however reactions linger and wain, sometimes it takes me days to feel better after lets say a trip to groceryside only of walmart. Do you travel from your home? Is there mold ANYWHERE YOU GO OR SLEEP AND REST TO GET WELL?... Have you had thyroid cked as all these other symptoms can mimic Graves' disease, weight gain or loss... Hoshimotos is opposite of Graves' and the weight usually tells which disease it is.... They would ck tsh, T free3, T free4. I KNOW THESE CONDITIONS CAN COME FROM EXPOSURES. I know it is ALL Related, brain fog, sleep EVERYTHING you show symptoms of..... I'm looking into a detox for these symptoms, hyperbaric chamber, plasma pheresis, eating GOD type food without additives or processed food that helps aide in liver correcting it's functioning. Research is time consuming and complicated and I will continue on as GOD sees fit to allow and guide. Have a wonderful Blessed day, GOD BLESS!!! (Spelling?)

• Reply

• By Loimmarmar
• Reply 3787097
• February 8, 2013 at 4:48 pm
• Report post

Just going through memories about this subject...steroids and or antibiotic use can exacerbate this symptom. Other things could be inhaler use, oxygen use, nebulizer use, use of lotions, perfumes....look at tongue, is put pinker in the in the middle and extends almost to edge, what about mint toothpaste, does it burn much more then? It sounds wierd but the bowel issues you spoke of and the burning mouth could be related. If you cover this with bandage you may not get to the root cause, the whole picture does take time to put together. I keep a calendar right beside me to document the unusual things that happen in body.. . I have done this for several years now and the drs are amazed with no explanations for the weird blood or other abnormalities. There is no name yet for this cascade effect that happens after either short term intense or long term minor exposures...I am not with green peace or any of those other organizations, I just know what I've lived and being on that helicopter in the middle of the night in a blizzard, flown 65 miles and a 13 hour craniotomy, I know I'm here to help others. Systemic Cascade effect, air to blood to bone marrow back to blood to organ of lung, heart, kidney, stomach, gall bladder, adrenal glands, thyroid, brain, lymph nodes, intestine, large and small bowel........hair, nails, skin, mucus membranes, ......liver is there with pancreas to clean toxins and provide gastric juices for digestion,.... What if the liver is to overloaded? Where does it all go? It becomes a cascade of diseases, conditions, syndromes...... Take drugs to stop symptoms, problem still exists, just put a band aide on it, how do we fix it doc ,,,,,,,I don't know, I'm not sure, take this pill.....oh, it didn't work, well here try this one......yea, yea, yes....why not... Lets get to the cause and fix it from the inside out.... I want to become the very first. F.I.O. . That stands for figure it out.... We go to dr for the 7 -15 min appt and leave with testing papers and say oohhh I forgot to say this or that and even if you have a list.... Have you EVER been able to go through each thing. I would need 8 hours direct, uninterrupted time, except while eating together with them as symptoms are ongoing and some very specific like the swallowing thing and to get everything on this list accounted for. Someone to go over blood test results that is curious enough to wonder why and then find out... Enough now, I just feel very strongly after reading your symptom list and I do believe that there is more, it is just that this symptoms is trying to get the best of you.... Have you tried to gargle with salt water and let it run from mouth don't spit hard. It does help a sore throat,.... The white chunks are coming from tonsils and that is a way that some of our bodies have a way of expelling toxins from lymphatic system, my youngest daughter has those symptoms and Dr Oz did a show one day where he explained it , it does not happen to everyone. I'm done for now, getting ready for the snow...Have a wonderful Blessed day. GOD BLESS!!

• Reply

• By mssherrie
• Reply 3788334 · In reply to 3787097 by Loimmarmar
• February 9, 2013 at 6:12 am
• Report post

I have been given Itracemzole s;..and the commomonefor the common yeast type infection.gets rid of the cheesey onem but the common one gets cured not the Wigellia or Exophilia one nothing happens....I am somewhatr immune impaird sj c]]]==[[ I tend to think it is a bug in the immune system that went wwonky with the /chronic fatiguethse

• Reply

Please log in to reply

Don't have an Inspire account? Sign up now!

E-mail:

Password: Forgot password?

Keep me logged in Checking this option will keep you logged in on this computer until you log yourself out. Do not check this option if you are on a public computer.