im fusturated

[normabubblesoOo]

here i am again! has anyone with chiari had any toothache and tongue tingling swellin on face. im fed up i want to pull my teeth out. and its only one side to my right side of face. myneck hurts, my mouth hurts, my throat is very tight that everytime i ttalk eat or move my mouth to swallow saliva it hurts, tingles all the over my right side of face to my temple and thoat. im not sched for another mri till 10/10/11. but i want to run to the ER!

[ewford]

Yes, she had the chiari surgically removed, BUT she was given large dosages of ABX for the Mycos which killed off a substantial ammount of bacteria circulating in her bloodstream .  The bacteria has a penchant for tissue, but lives in WBC's and RBC's.  She got better from the ABX but will regress since she did not get all of the bacteria.

[ewford]

she was treated for Mycoplasmas with ABX, and had a reaction, which is normal.  Its a Herx.  Look at the other personal stories and go to IMMED.org and look at AUTOIMMUNE ILLNESSES.

[ewford]

Does your neck crack?   sore feet, ankles, IBS, Fibro, stabbing sensations, light sensativity, gas (flatuate more than normal), retch ( feel like throwing up), joint and muscle pain that migrates? short term memory loss, sensativities to smell or sound?

[selmaS]

  From what u said here I still do not see what u r trying to tell us...we all know that as a chiarian we have auto immune issues, as well as connective tissue disorders....

The article u cited only says the girl was dx'd with that Myco what ever, not treated for it, but she was treated surgically for the chiari and is better now.

[ewford]

Jeeze, I'm looking at all these personal stories on this American Syringomyelia and chiari and they all have the same issues.  They are ALL mycoplama related, EVEN the child that was born with extra digits.  Since the mycoplasma damages the DNA and RNA it fits right in that it can be passed.  If you have symptoms, ask your parents if the suffer from CFS, IBS, Fibro, MS, ALS, Lupus or any other conditions like diabetes mellitus (type 2).  Heart murmur is a tachycardia in the left ventrical or someone might be diaged with COPD or Mitral valve prolapse.  The headaches are caused by the red blood cells being damaged by the bacteria and swelling them up causing them to not  be able to squeeze through the capillaries in the head, feet and hands.  That causes cold hands, feet and headaches.  If you had a 24 hr ECG, you would see a heart that would go  buh-BUMP, buh-BUMP,,,,,,buhbuhbuhbuhbuhbuh-BUMP  buh-BUMP.    If the doctor did a blood test that took blood out, put a tracer in it then put it back, waited an hour then examined it, it would show 10-60% less blood needed per weight.  

[roktta06]

OMG!!! I switched from Crest to Colgate and this Colgate tooth paste was driving me crazy!!!!! I thought that I had lost my taste....my tongue tingled like crazy... my gums hurt horribly .... my was so depressed that yet another symptom had flourished...but  living with Chiari for all my life I try not to blame EVERYTHING on this...so I started to examined what I had done lately to  bring on this sudden change...bingo Colgate... switched again to Crest and all back to normal....!!! YES!
Chiari sufferers have to keep a close track on everyday changes (not obsessively though ) so you can change what makes your symptoms worse and not blame everything on Chiari...I sometimes observe my  "healthy" friends and they have back problems, neck pain etc... that  makes my reflect on my issues...I am not that bad off!
Stay off Colgate!
PS: A close friend of mine was telling me that her mouth felt weird and couldn't find out why..I asked her, did you switch toothpaste? YES! I switched to COLGATE she answered ...HAH! lol!

[ewford]

Read this article.  Read what she was diagnosed with.  Mycoplasma.  Dr Garth Nicolson (who was a Nobel nominee, written 3 world renown Citation Classic papers, over 600 peer reviewed and accepted papers and has won numerous awards) has discovered that Mycoplasmas cause chronic intracellular bacterial infections that dissable the immune system and cause suppressed viral and fungal infections to go unchecked.  These Mycoplasmas damage organs throughout the body and can be passed via the placenta and other vectors.

  The bacteria, small as a virus, infects cells, and multiplies slowly, over 10 to 28 days, not like standard bacteria.  Its almost like a mold.  But it can be cured by long term ABX such as Doxycycline, Minocin, Omnicef, Azithromyacin.  You have to use Macrolides since this bacteria penetrates the cell and consumes it from the inside.  Thats why you have some days when you feel OK, but others why you feel like c%^$p.  That is the cytokines being released into the bloodstream.   The Mycoplasmas dissables the immune system and alters the DNA and RNA allowing the T4 helper cells that fight cancerous growths to not function.  It also dissables the Macrophages that "clean up" any fungal or bacterial infections that the immune system fights off without standard antibiotics.

here is the article on the girl being diaged with Myco, and having a chiari.  The adverse reaction she had to the antibiotics is a Herxheimer reaction caused by the massive die-off of the bacteria.

put the  (.) in to see the page and close the spaces.

****  ******

[selmaS]

  I have to add they may not know what causes chiari as it happens inutero....but, I have had the surgery for chiari and it helped my jaw and facial pain....

  SO even tho it sounds similar, it does not mean this is not from chiari itself since most of us have it...and y our drs do testing to rule other things out.

  I feel it is finding the right Dr that knows what to look for....and does the appropriate testing.

  Once u have that, and most here know we tell them all to have all this testing to rule it all out....

  I appreciate ur concern and for sharing ur info.

  

[ewford]

Lymes bacteria is pleomorphic and the surface proteins change continuously.  Consequently the antibodies produced, if any are, will not be effective.  There is a very good chance her Western Blot was negative, so the dr said she dosent have Lymes.  Happens all the time.  And the patient gets worse...

Also, I stated a Mycoplasma Fermentans Incognitus infection.  This bacteria is INTRACELLULAR, so it will not be picked up on by standard tests.  Chiari symptoms are EXACTLY like this infection(s) but they drs dont know what causes Chiari, they do know what causes Mycoplasmas and can test for them in specialized labs.  You might want to look into this.  Lupus, MS, ALS have no "known" etiology, but it is known when these patients are given Antibiotics, they get better and their symptoms subside.

[selmaS]

  Hi and welcome to the Chiari forum.

  Do u also have chiari?....This thread is in the Chiari forum, and we all know it is chiari related and our Drs do rule lymes , lupus and MS out.....

[ewford]

i think it's either Lyme AND/OR a  Mycoplasma Fermentans Incognitus  Intracellular bacterial infection.  It won't show up on any Labcorp or Quest test OR any standard lab tests.

[selmaS]

  No worries...keep us posted : )



     "selma"

[classiechic]

I bruise easily and It takes forever for the smallest scab to heal. I have pressure sores on  my left ear from talking on the phone, that never heal.

Now I'm nervous. =( I'm definitely gonna ask my NL. Thanks again. =)

[selmaS]

  Well I was the last one to think I had it either...and I do...all I knew was I was slow to heal and easy to bruise.....

  The rest was all a shock to me.

   "selma"

[classiechic]

Thanks sooo much. I doubt I have that. I will surely ask my NL though.

[selmaS]

  Usually the NL during the neuro part of the visit will have u stand up and they look to see if ur elbows hyper extend, knees...etc....if u can put ur palms flat on the floor with ur knees straight...(not this one for me, ever!) and they look at ur knuckles ....there is a list they follow and u r assigned points for each that is qualified and then u either fit or not....if u do they suggest u see a rheumatoid Dr that specializes in EDS...and they most likely may send u to a geneticist for further study. It is one test for both EDS and JHS.

  "selma"

[classiechic]

I'm going tomorrow for my MRI. How do they test for EDS? JHS?

[selmaS]

  Hi...most that have chiari and TMJD most likely also have EDS or joint hypermobility.....

So , if u r having these issues, do make sure u r checked for EDS or JHS.


    "selma"

[classiechic]

I can relate....i've never until recently noticed dental problems. My gums itch, bleed and are sore. I do have TM, Terribly. In fact, my ENT told me at he thinks my headaches were caused from it. I believe its Chiari related. :(

[2009Zipperhead2009]

Ive just recently experienced the same thing. ALL my teeth hurt. I used to be a dental assistance so I know a lot about dentistry n knew it wasn't pain from my teeth.

Glad to know it was Chiari!  :(

[linnielou232]

Oh another thing came to mind after I wrote to you.  I talked to a Nurse who had a lot of knowledge on Chairi. (more than some doctor's) and she said. "inmagine your tongue, your throat, mouth etc is all connected to the nerves in the back of your neck."  So having Chairi and if you do find that you talk a lot some times you will find that will cause mouth problems.  Which made a lot of sense to me.  Talking to this nurse was so helpful and it helped me understand.  It does make sense.   As she said. "you have to look at the big picture".  All these muscle are all trying to work together.

[linnielou232]

I have had that trouble before I actually went to the Uof M of michigan and they diagnosis me with TMJ.  I couldn't believe it.  After more reserarch and more doctor's I did find out that it is a lot of signs to people who have chairi.  It goes to show you every one has different symptoms.  I used to and still do occacionally have soreness or tenderness on the rough of my mouth which this has never been explain.  I did mention to some one else on here that had the same problem that it could be the medication that you are on and this one might be crazy sounding by I read it in the paper one evening with someone who had the same symptoms as we did and the Dr responed that it could be your toothpaste  belief it or not.  I used to use crest and now I switched to Colgate and I don't know if that is what helped or my surgery, but it wouldn't be bad to try.  Let me know.  I will be interested to find out if this help's you.  I had a lot of problems with this.  I actually went to the dentist a couple of time's because I didn't know what else to do and every time I went I had a good check up.   Good luck