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Rachel--24

New Doctor...

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Rachel--you must be SO excited! It looks like you found that dream doctor we all wish we had. Here's hoping the tests uncover something--it sounds to me like even if they don't, this guy is going to work with you until he figures it all out. How did you find out about him? I would love to find someone like that here in NJ. Is he a GI or Allergist, or other?

I'm happy I found this doctor. I feel like if he can't help me....noone can. I really dont know what happened to wear down my system sooo much that I cant function normally. I'm so chemically sensitive and it came out of nowhere. My tolerance is very low and once I hit my limit it's pain, major brainfog, blurred vision etc. I'm having a very bad day today. I hope he figures something out soon cuz this is really wearing on me after 3 years. Two things happened the month before my symptoms started. I had dental work done by a dentist who put gold crowns on top teeth which were in direct contact with silver amalgam on bottom teeth. It was causing alot of stress in my mouth and electric-like shocks. My jaw was tense and I started grinding my teeth. I also went camping right before the dentist appt. and there were alot of deer coming around the campsite. This was in Sept. 02...by January 03 I was off work on disability, so everything came on pretty quickly. My Graves Disease also came out of remission at that time.

When I started researching stuff I read that 2 different metals should NEVER come into contact with each other in the mouth because this releases mercury rapidly. The other thing I wonder about is Lyme Disease but I really dont have too many symptoms associated with it. Its all scary to me. All I know is I was perfectly healthy and happy and all of a sudden I wasnt.

The doctor said they can test for heavy metal toxicity but he is prioritizing as far as the tests go. I wondered if one of these things could have triggered the gluten intolerance. His opinion is that gluten sensitivity would have been a problem for me my whole life even if I felt fine. He said the body can adapt to it. He compared it to smoking. The first time you try a cig. you cough, gag, get light-headed etc....but once you keep exposing yourself to cigarettes your body adapts and you dont feel the symptoms anymore but its still very harmful to your system. He said gluten is the same way but if additional stressors are put onto your immune system sometimes the body can no longer adapt and symptoms reveal themselves.

So...he said its likely I was exposed to some mercury during that time but a healthy body can handle something like that. If gluten was already causing stress to my system the mercury could have just been the final straw that sent me over the edge and then other things piled on top of that.

I feel impatient now...I just want to get on with my life. This is no fun and I'm scared alot of the time. Its a little less scary now that I have this guy helping me as oppossed to having doctors shrug their shoulders at me all the time but like I said, I'm impatient now. All of a sudden at the start of the new year it hit me that 3 years have passed and I'm not living my life the way I should be.

Jersey,

To answer your question I found him accidently. Someone from this forum recommended a Celiac Specialist from Stanford. They have a Celiac clinic there and this doctor heads the clinic, is involved in research and has celiac disease herself. I was excited to go see her and switched my insurance so that I could. In the end I couldn't get an appt. cuz she only sees people with biopsy proven Celiac. They were willing to schedule me with another doctor but I was disappointed. Later that night I was at health store looking at gluten-free stuff and my Mom picked up a flier for gluten resources and the Stanford Clinic was on there as well as 2 other doctors. I decided to call this guy and they scheduled me for a consult the next day. Maybe it was fate? Everything happens for a reason but I realize if I had gone to Stanford they probably wouldnt have helped me. My problems go beyond Celiac and if I could have dreamt up a place I'd like to go to and the type of doctor Id like to see it would this place and this doctor. So yes, I'm happy but not really excited. I guess I've had that excitement feeling everytime I went to see a new specialist in the last 3 years and I always got let down. Now I'm just tired I guess....I dont want to get my hopes up too much but maybe once the ball gets rolling so to speak I'll feel more excited. The tests take about 10 days to come back and I havent taken all of them yet. I think I'm just frusterated , impatient, having a bad day, and wanting answers right now.

The doctor is not an M.D....he's actually a chiroprachter and a nutritionalist....Does that make him a doctor or something else? :unsure: Anyways, he specializes in digestive health and diet and things like that. There is also an M.D. there who I had an appt. with for a physical and we talked about all my health problems. She works with him and together they decided which tests to run and how to proceed. For the most part I will be seeing him from now on. This is a link to their website to get an idea of how they do things....maybe you can find something similar in your area? Maybe if you call them they can recommend something?

http://www.healthnowmedical.com/

P.S The man in the picture is the doctor I'm seeing and the blonde female doctor is the M.D working with him on my case. :)

I'm used to doctors not wanting to deal with me cuz I'm too complicated (I was a Kaiser patient until this month). Now that I saw that woman doctor....she actually said she likes "interesting" cases....THAT was something I'd never heard. Well, it should be interesting to see how everything plays out. He said I can return to the same healthy person I was 3 years ago so I pray that he's right. :)

Oh yeah...I got all the metals taken out of my mouth a couple years ago when I read all that stuff about different metals and mercury.

If you think that people that spray themselves heavily with perfumes are bad – you ain’t heard nothing. I worked near a guy who is schizophrenic that sprayed himself, and/or his clothing, with RAID! Yes, the bug spray. I’m not making it up. He started out on the “soft” stuff, OFF, for campers, and progressed to the “hard” stuff. I complained to Human Resources, and they did nothing. I was considering contacting OSHA, Occupational Safety and Hazard Administration, but didn't.

Wow! That is bizzare. :blink:

I'm glad I have noone crazy enough to do something like that at my work cuz I wouldnt be able to make it through the day.....EVER.

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Rachel--I understand the feeling of not wanting to get excited after being disappointed time after time. I'll certainly keep my fingers crossed, though. Thanx for all the info. I checked out the link--and e-mailed asking if they have any recomendations for me in my area. It sounds exactly like what I'm looking for. I wouldn't be surprised if this type of practice becomes more widespread in the future. So many of us fall into a kind of medical "grey area". I suspect I have more going on than just the Celiac--I was ill for 20 years before I was finally Dx. The diet is helping, for sure, but I have lingering neuro. symptoms and I know there are other food intolorances. It would be so helpful to find someone to help unravel this thing.

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Rachel--I understand the feeling of not wanting to get excited after being disappointed time after time. I'll certainly keep my fingers crossed, though.

Thanks Jersey,

Most days I'm not this down but its great to be able to express my frusteration here...everyone is always so supportive. :)

I hope they can recommend someone to you. They are very friendly there. Good luck! Let me know if you hear anything.

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This past monday I had 4 large vials of blood taken at the celiac center of Columbia U, and I'm going back next week for the (bllood) results, an endoscope, a bone density test, and a consultation with their nutritionist.

Although I feel MUCH better now than I did before going gluten-free, I don't expect to see any drastic improvement in the numbers and scope results. I've never had a bone density test before.

Good luck, it sounds like you found a great Doctor.

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Rachel, thanks for posting that link. I live in your area and am wanting to find someone who will work with me to try to find out WHY I feel badly, not just prescribe medications. I'm recovering from surgery right now, but I'm due for an annual exam in the next month or too, so may go to them instead of my regular MD. Thanks!

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Most days I'm not this down but its great to be able to express my frusteration here...everyone is always so supportive. :)

Dear Rachel,

I'm so glad we can add some support.

This sounds like a wonderful place and I hope you can get some answers.

I'm now wondering if this 'environmental' issue isn't something I've over looked.

1. 10 years ago forced to continue working in a air tight room after new carpets put down with that 'glue' that now has been outlawed...Eyes, chest, throat burned and horrid head ache

2. 7 years ago when I changed jobs and worked in a hosptial --everytime i got off an elevator on a floor with the new rugs...my throat would close and chest & eyes burned and would have to get back on elev.

3. the last year I worked there-- the path lab above me would put 'ziliane' (?) down the drain (OSHA ) vialation big time...Know it is a cancer carceogeon(?) ..anyway..would keep getting sore throats, buring chest and headaches..would call Safety office who would hang test strips etc. to detect...always a reason why the results were inconusive. Finally Dr.s using my office would compain and finally they sited the lab becasue the dr.s couldn't use my office to study for their exams...

So wonder now about this issue if it's all what cause the start of my immune issues..

lots of medical issues with me too....had a growth on my adrenal gland for years that they just say is 'normal for me'???????

I'll keep looking at your thread and PLEASE KNOW WE ARE ROOTING FOR YOU...and hoping you get answers and then can share with us too.

Thanks for the site..it's great

Judy in Philly

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Rachel,

Thanks SO MUCH for the link. I'll check it out and see if I can find something similar locally. And I'm so glad you found someone to help you. I understand completely about not getting your hopes up - that's how I felt when starting the gluten-free diet. And even though it's only been a few months, I've already seen enough improvement to know that this is a major part of my problems. So now I'm starting to feel excited. But since I've had problems for so many years, I'm sure that gluten is no longer the sole problem, and I need to check out some other things if I want to completely heal.

Debbie

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So happy for you getting some answers and fighting so hard for your answers and being 24 years old (if i read your id correclty) is amazing to me coming from the old 'drs. are god' generation. I've come a long way baby... :lol:

Judy in PHilly

Hi Judy,

Thanks for all your kind words!

I'm actually not 24 though....I'm 34. I'm sooo glad all this didnt happen when I was 24 cuz I enjoyed 31 years of excellent health. Hopefully after all this gets figured out I'll have plenty more good years ahead. 24 is my favorite # so thats why I used it....I was in such a hurry back then to register (wanted badly to ask a question) I didn't put much thought into my user name so thats what I'm stuck with. Never thought I'd still be here 6 months later...just wanted to ask a quick question about Celiac. I guess you guys are stuck with me now. :D

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Hi Rachel,

Even at 34, I'm impressed!

I was interested in the adrenal issue.

I put a post earlier on to one of your other posts re: new dr...adressing the adrenal testing since i have a tumor or something on mine since showed up on a scan in 1986

Did you see that one? Told of some of my other questions.

Also thanks for trying to help me figure out the 'orange boxes' in front of the word pinned.

Still don't understand it :lol::lol::lol:

Judy in Philly

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Rachel, I checked out the link, and that place looks just awesome. A chiropractor studies just as long as an MD, and actually has more classes in diagnostics than an MD. And he is a doctor of Chiropractic. They also get more training in nutrition than medical doctors. Sounds like you're in good hands.

My chiropractor is awesome, too. I go to him with problems before I go to my MD, because he is so much more knowledgable than she is. He also has a homeopath in his office, who I consult with (as well as a massage therapist, but I haven't tried her yet, because I can't handle being touched for longer periods of time, due to autism).

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I was interested in the adrenal issue.

I put a post earlier on to one of your other posts re: new dr...adressing the adrenal testing since i have a tumor or something on mine since showed up on a scan in 1986

Did you see that one? Told of some of my other questions.

Also thanks for trying to help me figure out the 'orange boxes' in front of the word pinned.

Still don't understand it :lol::lol::lol:

Judy in Philly

Judy,

I actually know pretty much nothing about adrenals. I've researched alot of things the past 3 years but nothing having to do with adrenals since I was told by my endocrinologist that mine were fine. I dont know what that was based on because I dont recall having any tests done. At that time the main focus was on my thyroid gland which we (falsely) believed to be the cause of all my symptoms.

I will post the results of my adrenal test once I get them...probably close to 2 weeks from now. Maybe by then I'll have a better understanding.

As far as the orange boxes...you will see one indicating that there is an unread post in this topic (the one I'm writing right now). Once you read this post the orange box will go away until the next time there is something new written in this topic.

Hope that helps a little. I'm not the best at explaining technical stuff. :)

Rachel, I checked out the link, and that place looks just awesome. A chiropractor studies just as long as an MD, and actually has more classes in diagnostics than an MD. And he is a doctor of Chiropractic. They also get more training in nutrition than medical doctors. Sounds like you're in good hands.

Thanks Ursula,

Thats very encouraging. :)

I was a little confused my first meeting with him when he told me he was a chiroprachter. I was like :huh: "How's this guy gonna help me with all my problems?". Once he started talking to me I knew better though.

I have to say since I've researched so many things, usually when I go to the doctor they say things that are totally "off the wall" and give info. that I know to be false so I basically lose faith immediately and get very dissapointed. That was not the case with this guy....completely the opposite...for the first time I feel like a patient! I'm looking forward to my weekly visits and finding out the results of my tests.

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Rachel

Good news!!

Did this Dr. say anything about what he felt about York Labs?

Just curious.

Deb

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Hey Rachel,

It must make a huge difference having a doctor who actually lives the life we do. He sounds like he's experienced the gluten-free diet and knows about some of the secondary illnesses that may occur. I think some of the best doctors are the ones who take a personal interest in an illness and have experienced its effects.

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Did this Dr. say anything about what he felt about York Labs?

No he didn't mention any lab specifically. He just said he's sort of moving away from the food tests because they arent always accurate so he prefers an elimination diet. I took the IgG test back in April. It only showed low reactions to alot of spices and banana. Thats it. I react to almost everything though. He says this is a perfect example of why he doesnt like them.

I've been thinking about this and have a theory. He had mentioned that I am extremely chemically sensitive so we cant know for sure what it is I'm reacting to. It could be inhalents, pestcides on food...etc.

When I read about parasites (which he is sure I have) and their symptoms...they are identical to mine. They weaken the immune system and the result is increased allergies (especially to food) along with a bunch of other problems. It creates a toxic overload which then burdens the organs which also become overloaded. Eventually the toxic overload spills into the bloodstream causing symptoms. He said this is why when I get around perfumes it affects my brain and causes physical pain. This is how I feel...poisoned.

So....my theory is this. The food tests MAY be accurate...maybe I'm not so much intolerant to the foods I'm eating as much as the chemicals that may be in the foods. Maybe I react to everything I eat because my body is overloaded with toxins and cannot digest anything properly. So basically at this point anything could make me feel sick. This could explain why even though I was so ill my test showed no real problems to food and why also at certain times I can tolerate lots of food and other times I react to everything...even though my diet doesnt change.

Maybe if someone is just dealing with food sensitivities the tests will identify those sensitivities but if a person has underlying issues making them ill the results of the test may be confusing because they dont seem to correlate with what the person FEELS is making them ill.

Anyways thats just my theory. The results of my test could be dead on but I felt they were wrong because at that time I felt that food was the only cause of my symptoms.

I wonder if what I wrote even make sense? I just woke up. :unsure:

I'm taking 5 different tests to start with. One was a bloodtest looking for autoimmune stuff having something to do with my muscles. Not exactly sure but will ask more questions about that later.

Well I just got a receipt in the mail for the bloodtest I took.

It says it was for infections and autoimmunity.

IgG to Mysoin, Human Lupus and Athritis Peptides as well as 18 other infectious agents.

It lists all 18 infections...Most of them I dont recognize. The ones are recognize are Epstein-barr, H.Pylori, Herpes, Hepatitis, Chlamydia, Strep....and thats pretty much it. The rest are all long foreign words to me. They all seem scary to me though. :unsure:

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Hi Rachel,

I believe we have the same DR. Did you find the flier at Cupertino nutrition?

Well, I am going on my third visit with him and I am currently on the elimination diet which I find very hard, but its only for a month. I always had a feeling there was another food out there that bothered me and I think it is soy, but not sure yet. He told me soy protien can cause the same reaction as gluten in some people becasue of the similar molecular structure of the two proteins. I found that to be very interesting. Maybe that is why I could never feel 100% He aslo told me that it could take up to 3 weeks to recover from being glutened.

Let me know how your visits go and Ill keep you posted on mine.

Jessica

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Hi Jessica,

I didnt see your post till today. Dont know how I missed it but yeah we must have the same doc.....how funny! The flier came from Cupertino Nutrition....LOVE that store! I've had 4 visits with him so far. I go on Mondays. I'm not on any elimination diet right now....still taking tests and other things. Soy bothers me too.... I just figured that out recently. Keep me posted on how things go with your visits. :)

Anyways,

I got some test results back yesterday and had a pretty interesting appt. The test was checking to see if my body was having any autoimmune issues and also it checked for IgG against like 18 different bacteria. I've already been checked extensively for lupus and other autoimmune disease so wasnt too worried about that coming back positive...and it didnt.

The thing about my test results was that he told me everything was in normal ranges (anything under 100 is normal for these tests) BUT I was actually lower than what is considered normal for most people. He said I'm a "low immune responder"....meaning my body is apparantly not putting out enough IgG to show positive for anything.

While most people have numbers higher than 50....mine were mostly in the 20's and 30's. I had one 0 which was for Lyme bacteria. I had been worried about possibly having Lyme since I got sick shortly after camping. Well I'm happy I can rule that out now. :)

He said the immune response may be lower right now due to a compromised immune system and the numbers may go higher if I were to get better. For now he said he just has to go by the numbers.

All the bacteria/viruses I'm familiar with like Herpes, Hepatitis, H.Plyori and a bunch of others were pretty much ruled out with this test cuz my numbers were very low. There were 6 bacteria that I scored in the 40's and 50's. He said this is considered high for me because all my other numbers were much lower. All of these bacteria have 1 thing in common...they are all oral infections.

Right before I got sick I had some dental work done and it caused me some problems. It was one of those things where I learned the hard way...."don't fix it if it aint broke". Never will I take a dentists advice again....I had just went in for a cleaning. :( The work was unnecessary and ended up causing me to have a root canal and even after that the tooth still hurt me and I ended up getting it pulled. Never had a problem before all that happened. I had the dental work done the same week I went camping and started having symptoms a few weeks later. In the back of my mind I always felt either something bad happened with the dental work or I somehow contracted Lyme. Also had alot of stress in my life during that time and quit smoking that same month.

The doctor feels that there are infections in my mouth and it likely happened when my symptoms came on 3 years ago. If there *is* an infection it was likely the trigger for my gluten intolerance as well. Now I'm really not liking dentists. :angry:

All of the typical Celiac type symptoms cleared up quickly after going gluten-free but the worst symptoms which include swelling, headaches, burning sensations, eye problems, chemical and food sensitivities....never went away. They were my original symptoms and I still have them. All of the pain is in my head, neck and mouth. My whole body used to hurt pre-gluten-free but now its only my head still.

I'm still waiting for results of other tests...parasites, adrenals, etc.

The doc feels an infection like this could have put a big strain on my immune system and then with gluten intolerance and stress added on top...he said the "load" is too big for my immune system and thats why I'm reacting to foods and chemicals.

He's sending me to a specialty dentist to investigate further and hopefully find whatever is causing all this pain. Hopefully I'll get an answer soon cuz I just wanna feel good and eat a normal gluten-free diet complete with McDonalds french fries and all the Kinnickinnick products I can fit in my freezer! :D

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BTW...Something interesting I figured out. I never could understand why my ELISA IgG food sensitivity test was negative for EVERYTHING...even though I was reacting to alot of foods. I asked the doctor if being a "low immune responder" and not producing alot of IgG...could this be why I was negative for everything? He said its probably the reason.....soooo maybe the tests arent as unreliable as I thought. It also makes me wonder about my Celiac tests coming back negative. I wonder if I'm IgA deficient or if my immune system doesnt put out alot of IgA....similar to what happened with IgG testing.

Also my Enterolab results....although positive....were not very high...whereas the malabsorption score was extremely high (almost severe). It didnt seem to correspond with the numbers. I routinely see higher tTG numbers than mine but with no malabsorption/damage. That always confused me. Either something else is causing the malabsorption or I'm not putting out enough IgA Cuz I feel the numbers should correspond better. :unsure:

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Right before I got sick I had some dental work done and it caused me some problems. It was one of those things where I learned the hard way...."don't fix it if it aint broke". Never will I take a dentists advice again....I had just went in for a cleaning. :( The work was unnecessary and ended up causing me to have a root canal and even after that the tooth still hurt me and I ended up getting it pulled. Never had a problem before all that happened. I had the dental work done the same week I went camping and started having symptoms a few weeks later. In the back of my mind I always felt either something bad happened with the dental work

The doctor feels that there are infections in my mouth and it likely happened when my symptoms came on 3 years ago.

He's sending me to a specialty dentist to investigate further and hopefully find whatever is causing all this pain.

Hi Rachel

I always felt there was a connection with my teeth too.

before hip replacement had 3 root canals done and changed dentists.

i am to have cleanings evey 3 months but haven't gone for 7 months as i have to take antibo. and they rip me up and didn't want to add this to gluten-free after finally getting some control of it.

where i'm having pain today there are no teeth...????? just whole side of my face hurts....

Let me know about adrenals tests, etc.

glad you found this great Dr.

Judy in Philly

typing is a mess please forgive have to get dinner...finally

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How interesting--Why don't all doctors use these tests? Jeesh :huh:

I dunno. :huh:

The tests are fairly new. I think they've only been around about 10 years or so. Alot of the tests arent really diagnositc tests...they are considered "functional" tests. Basically they give the doctor a good idea as to where the problems likely are occurring and what things need further testing and so on. For example if the IgG for Lyme were to be high....I don't think it would conclude that I *have* Lyme Disease....but it would definately be a big "red flag" and would warrant further testing. He basically tested for stuff that could cause my symptoms and he's using that info. to narrow things down and ultimately pinpoint the real cause for these symptoms. Thats the goal cuz I've been sick for too long with no real answer as to why. Its obviously more than just celiac. The traditional doctors pretty much ruled out all disease and declared it to be "all in my head". Since nothing is indicating disease whatsoever (which is good)....its gotta be an infection of some kind.

Hi Rachel

I always felt there was a connection with my teeth too.

before hip replacement had 3 root canals done and changed dentists.

From what I've read bad root canals can cause major infection and you may not even be aware its there. :blink:

It can basically poison the body. Thats how I've felt this whole time....poisoned. :(

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From what I've read bad root canals can cause major infection and you may not even be aware its there. :blink:

It can basically poison the body. Thats how I've felt this whole time....poisoned. :(

wow Rachel,

it makes me wonder :blink::blink::huh::huh:;)

Judy

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wow Rachel,

it makes me wonder :blink::blink::huh::huh:;)

Judy

Sorry Judy, didn't mean to freak you out. It was just something I rememeber reading...dont even know if its legit or not.

Whatever happened to me had already occured before my root canal.

I dunno, maybe it was something I did wrong. I remember that after they removed old fillings they put in temporary's. I forgot they were in and I chewed gum which caused one to pop out. I also didnt take all the antibiotics they gave me cuz I was forgetful and didnt like swallowing pills anyways. I also had the temporarys in for a longer than normal amount of time due to vacations, work and holidays. I guess going back to the dentist wasnt high on my list. I think something may have happened cuz thats when my symptoms started. :(

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Sorry Judy, didn't mean to freak you out. It was just something I rememeber reading

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Judy,

In that case...glad I could help. Hope all goes well for you. :)

I got scheduled to see the dentist one month from now. That is WAY too long for me to wait. I've been sick 3 years! I'm throwing a fit....trying to get in sooner. If all of my problems are originating from an infection in my mouth then all I have to say is wow! A mouth infection can cause some serious damage to the body!

I had alot of problems with one of the new crowns they had put in and ended up getting the root canal and still hurt to even touch the tooth with my tongue. They couldnt understand why it hurt cuz they had done the root canal "perfectly". About 4 dentists later a holisic dentist I saw told me something was clearly wrong with the tooth and there MAY be infection involved. He recommended getting the tooth removed. I did and obviously it doesnt hurt anymore...since its gone now. The rest of the problems are still there. My head has been hurting for 3 years. :(

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Rachel

Went to the new dr thread..where the c diff ??

Did you post it somewhere else or didn't you post.

don't take time just when ever you feel up to it.

just didn't want u to spend time retyping if it's somewhere.

judy

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