Omg...i Might Be On To Something

[Judyin Philly]

Someone else uses the onion analogy too......maybe it was Rinne.

I so agree--that dang onion has soooo many layers..

Rachel I've been watching for your results.

Will be back on Thurs...heading to the shore tomorrow.

hugs and prayers for healing and ANSWERS

JUDY

[Daxin]

Andrea, it's possible it was cc. I have been careful, but also, I've been trying to cook for the kids (both gluten eaters) so I may have not been careful enough.

[Guest Mtndog]

The thing that freaks me out is that all these "symptoms' like Lyme, Celiac, mercury poisoning and a bunch of other things (thyroid) share SO MANY symptoms in common it's a wonder any of us are able to figure out anything. For example, I thought I had fibromyalgia but it turned out to be legumes. Now I have no Fibromyalgia symptoms at ll unless I eat legumes.

Lancpa- Who told you corn conatins gluten? it may ahve a similat protein, but I don't think it's gluten.

Rachel- I'm feeling much better since we moved out of our apartment. I've gotten glutened twwice by CC but it's only lasted a day. No more nausea, vomiting, D. The only bad thing is that when I had my gall bladder out in may, something went awry so now I have a belly button hernia (yuck!!!!!!!!!!!!!!!!!) that has to be repaired surgically. I can't lift more than 10 pounds which stinks- we haven't moved our stuff out of our apartment yet as we are still with my in-laws and not moving into our new place until October 1st. I guess I can pack and others can carry 9oh well ). My husband says I have some disease where my body knows it's time to move and does something so that I can't pick heavy objects up.

[CarlaB]

Beverly, glad you're doing better!

I think that everything is related. I know I really have a gluten intolerance and have had it my whole life. I also know that every time I've been under stress, I have had fatigue that eventually gets to the point where I can't even get out of bed or function normally. During these times of stress, I would also have digestive problems (not now since I'm gluten-free).

What I think is that each of us has our area of weakness and the stress on our bodies shows in that area -- for me adrenals, though I have also had joint pain and that was what eventually led me to discover my gluten intolerance. I also think it's a delicate balance for each of us to get better. We need to find all the pieces of the puzzle, and for those who have been sick for a long time, there may be a lot of pieces. I actually had my amalgam fillings removed about 14 years ago because of health problems back then -- disabling fatigue. I think it's good that all this is discussed here so that people can find all the little pieces of the puzzle because for some of us just going gluten-free is not enough!

Enjoy watching everyone carry all the heavy stuff!!

[lindalee]

). My husband says I have some disease where my body knows it's time to move and does something so that I can't pick heavy objects up.

[AndreaB]

Beverly,

You found a place! Have fun packing, hope you don't get sick going back to the apartment. Take it easy and let the guys do the heavy stuff.

[christine 25]

I need some advice.

I need to get another root canal,,,I have had a throbbing, swollen, nerve shocks and pain for the last 5 days in my back tooth.

prob its going to be 2000$ i dont have it....

Does anyone get tooth pain and gum swelling after eating certain foods, I was fine before I went on a dairy binge, where i went to whole foods and ate a bunch of goat cheese, and also drank milk, burtilized my body with dairy. Aparantly I cant take it cause i react and feel miserable ever time I eat hard cheese and milk.

My teeth have been acting out since then, and its so painful, im wanting the root canal ASAP to take out the nerve.

Its weird sometimes I feel like my teeth are imflammed a lot;.

I never had mercury fillings but I guess I have a lot of oral problems, head neck shoulders, bone skin soft tissue and teeth. in the head and neck area.

FYI for Donna, my last crown was proceline with ceramic, no metal either.

Should I get the root canal done and over with now or wait a little while? Cause my Delta dental insurance from the hospital doesnt kick in till Jan 1st, i dont know if I can wait that long, Im looking foreward to the nerve being gone.

besides im going to need another one after this too $ ouch! my ins. will only cover 1200$ a year.

teeth restorations are so expensive!

[jerseyangel]

Christine--

I agree that root canals, crowns, etc. are terribly expensive. My husband just had his second root canal in 2 weeks!

I don't know if this will be useful to you, but I get sometimes severe jaw and tooth pain, especially on the left side. This pain, along with neck, ear and shoulder pain led to a diagnosis of TMJ disfunction. I was actually diagnosed by an Ear, Nose and Throat doctor, but the pain I had felt like a bad toothache.

I was refered back to my dentist, who took an impression and had a night guard made for me. It keeps the jaw in proper position and keeps me from clenching so hard while sleeping that I damage my teeth.

As for if it's food related--in my case, I don't think so. In the past year, I've gone gluten-free and have eliminated all of the other foods that give me obvious problems. Unless, of course, I'm missing something....that's possible, too.

[CarlaB]

Christine--

I agree that root canals, crowns, etc. are terribly expensive. My husband just had his second root canal in 2 weeks!

I don't know if this will be useful to you, but I get sometimes severe jaw and tooth pain, especially on the left side. This pain, along with neck, ear and shoulder pain led to a diagnosis of TMJ disfunction. I was actually diagnosed by an Ear, Nose and Throat doctor, but the pain I had felt like a bad toothache.

I was refered back to my dentist, who took an impression and had a night guard made for me. It keeps the jaw in proper position and keeps me from clenching so hard while sleeping that I damage my teeth.

As for if it's food related--in my case, I don't think so. In the past year, I've gone gluten-free and have eliminated all of the other foods that give me obvious problems. Unless, of course, I'm missing something....that's possible, too.

The good news about TMJ treatment is that it's covered by MEDICAL not dental insurance!! I've had pretty major TMJ treatment that in the end is going to have cost close to $10k, but medical covered it ... I had a splint, then am getting braces ... mine was pretty bad.

[jerseyangel]

The good news about TMJ treatment is that it's covered by MEDICAL not dental insurance!! I've had pretty major TMJ treatment that in the end is going to have cost close to $10k, but medical covered it ... I had a splint, then am getting braces ... mine was pretty bad.

Yes--an ENT diagnosed mine, and insurance covered everything.

[CarlaB]

Mine was diagnosed by a dentist, then I was referred to an orthodontist.

[dlp252]

Yep, TMJ was confirmed by the Endodontist in my case. I haven't seen my regular dentist yet (will on Friday) nor my ENT.

Christine - wow, $2,000...fortunately they estimated my root canal at $1,100 and my portion was only around $290 or so. The crown will be additional...I have to have that at my regular dentist's office. Hopefully porcelain will be less costly than the gold crowns (my portion for gold is usually around $350).

Beverly - glad you are feeling better, but sorry to hear another surgery is necessary!

Ryan - good to hear from you!

I'm feeling better than last week...I think the allergy testing must have thrown my allergies into a tizzy even though it was only for food and I was only reactive to one food (plus the histamine control). I took Zyrtek yesterday and the day before and that seems to have cleared things up a bit.

[rinne]

Hello all.

It is so quiet around here, how are you Rachel?

I spoke with a doctor yesterday who is going to test me for heavy metals, hormonal imbalances, nutritional deficiencies, Celiac and Lyme and a whole lot of other stuff. I had emailed him a letter detailing my symptoms that he read before we talked. He thinks it is quite likely I have Lyme and probably Celiac as well although gluten intolerance for sure. He uses Enterlab and Igenex so I am confident that I will get accurate test results.

I felt stunned after I spoke with him, I have wanted someone to take me seriously and he does and it would seem that should be a good thing but it has only been in the last couple of months that I have been able to admit that I am ill and that admission still had a quality of unreality to it. His confirmation has made it very, very real.

I spoke to him about my decision not to have the endoscopy and colonoscopy and the reasons behind that decision and he respected it although he would have liked the results from the endoscopy. He told me that my Vitamin B 12 was way too low and that I need injections, he was very specific about the kind of B 12. He emailed me the Kleinhardt Protocol for treating Lyme which begins with the Salt/Vitamin C treatment. It seems he may be a good match for me since I am committed to the salt/c in any case.

The catch is this is not covered under our great public health care and I will have to fly to another city a ways away.

[dlp252]

I spoke with a doctor yesterday who is going to test me for heavy metals, hormonal imbalances, nutritional deficiencies, Celiac and Lyme and a whole lot of other stuff. I had emailed him a letter detailing my symptoms that he read before we talked. He thinks it is quite likely I have Lyme and probably Celiac as well although gluten intolerance for sure. He uses Enterlab and Igenex so I am confident that I will get accurate test results.

I felt stunned after I spoke with him, I have wanted someone to take me seriously and he does and it would seem that should be a good thing but it has only been in the last couple of months that I have been able to admit that I am ill and that admission still had a quality of unreality to it. His confirmation has made it very, very real.

I spoke to him about my decision not to have the endoscopy and colonoscopy and the reasons behind that decision and he respected it although he would have liked the results from the endoscopy. He told me that my Vitamin B 12 was way too low and that I need injections, he was very specific about the kind of B 12. He emailed me the Kleinhardt Protocol for treating Lyme which begins with the Salt/Vitamin C treatment. It seems he may be a good match for me since I am committed to the salt/c in any case.

The catch is this is not covered under our great public health care and I will have to fly to another city a ways away.

Wow! That's good news though...it just feels so good to have someone take us seriously! Not so good it's not covered and that you have to travel!

[rinne]

It is good news and I am grateful that although we certainly don't have much we have enough for me to do this and my sweetie is very supportive.

[AndreaB]

Rinne,

That is so great that you found a good doctor who is willing to listen and run all the tests. Yes, it's a bummer that you have to pay out of pocket and travel.....but I think it is worth it.

We are having allergy testing done tonight for T, M & M. Don't know if they'd want to test S or not. We are choosing him since he likes to figure things out. He is an MD. He is not covered on our insurance either.

Our health is worth it, IMO. We don't have the money either.

Reminder, Mitch goes in tomorrow morning. He'll head in for surgery at 7:30. My mom has been gracious enough to get up early and get down here at 8 am so I can head up with my stepdad to get Mitch's car for him to drive home while I wait for Mitch to get done and into recovery. He'll probably be there until around 10 and then we'll head home. Talitha got half of one subject ahead so far. We had to go back to finish today's assignments.

[Rachel--24]

Rinne,

Thats great news....he sounds like a good doctor and the fact that hes takes you serious and will test for all these things makes it worth while even if you do have to travel. I'm excited for you. I wonder if my new doctor knows anything about the salt/vit c thing??

I've been admitting to myself pretty much since the beginning that I'm ill....no doubt about that. Its just been convincing everyone else and finding a decent doctor (who's not only on the same page but running the important tests) that has taken way too long. I have alot of support now but most people dont realize what I go through because they cant "see" anything wrong with me and I appear to be healthy. Its so great to go to the doctors and have them understand and *know* how I feel even though nothing is visible.

I dont know what type of doctor you found but I'm figuring he's probably not mainstream?? All the mainstream doctors seemed to judge me from appearance only and none of them seemed to recognize that something was really wrong on the inside.

My neck's real stiff all the time...it creaks and cracks. I'm constantly massaging it and stretching it....some days its just annoying and other days are worse. I remember telling the docs about my neck and they would all tell me the same thing..."Everyone gets a stiff or sore neck sometimes...you probably slept wrong thats all." They wouldnt understand....this is no "normal" stiff neck I'm talking about. This is something out of the ordinary and something I know those doctors have *never* experienced.

This is a symptom of Lyme Disease but I'm sure its a symptom of alot of other things as well. I'm still waiting for my test results. I havent called the doctor to find out if they're in and I'm not sure if he'll call when he gets them or if he'll wait for my next appt. Igenix is in Palo Alto, CA...Its one city away from my doctors office...I wonder if my results would come back sooner since the lab is right here???

I'm telling you...the wait is killing me. I'm not very patient at all.

When are you going to see the new doctor??

I'm glad that you're sweetie is so supportive.

Andrea,

Good luck with everything tomorrow.

[rinne]

Andrea, I hope everything goes well for Mitch tomorrow.

Rachel, I'll be going in the middle of October for one week which includes a six hour lecture to all his patients on the last day. He was a conventionally trained Doctor until 10 years ago when he took the alternative route and studied aruvydic (spelling?) medicine and acupuncture. He operates an integrated centre for medicine. When I talked to him about the CT Scan, which by the way is the equivalent of a hundred ordinary x-rays, he agreed that subjecting me to that load of radiation was an unnecessay risk given that the unltra-sound showed only the small cyst in my kidney. I told him I decided not to proceed with the endoscopy or colonoscopy with that doctor because of that decision and the fact that I felt burned afterwards. I told him I had no trust in that doctor because of that and he agreed with my assessment about trusting a doctor who did not take that into consideration. I felt like I was having an adult exchange with someone who respected me. Wow.

If anyone wants information about him PM me, he offered to refer me to Lyme Literate doctors in the states, he does not focus solely on Lyme patients although he has some and says he attends Lyme conferences and hangs out with LL doctors.

[Green12]

rinne, great news! I'm glad you finally found someone that listened to all of your concerns and took your health issues seriously. Sounds like he is going to work with you, rather than against you. Best of luck with it all and please keep us posted I also think it's key to have such support around you, so you have a very good sweetie!

Andrea, Mitch will be in my thoughts for his procedure tomorrow

Donna, glad you are feeling better

Mia Mia, if you are out there, just checking to see how you are doing. Haven't seen you around lately. Hope you are doing well

[Matilda]

I'm telling you...the wait is killing me. I'm not very patient at all.

Hi Rachel,

I'm very impatient! Can't you just ring him up to spare your readers the wait?

Gosh, wouldn't it be something if you got a definitive answer? It sounds like your doctor's open to various possibilities, which is excellent.

Anyway, I feel like I've been left on a cliff-hanger here.

Of course, I do understand that this is far more important for you than for me, LOL.

I really hope you get some answers soon, and can get on with being as healthy and happy as you look.

Best wishes,

Matilda

[rinne]

Anyway, I feel like I've been left on a cliff-hanger here.

Me too.

[miamia]

rinne, great news! I'm glad you finally found someone that listened to all of your concerns and took your health issues seriously. Sounds like he is going to work with you, rather than against you. Best of luck with it all and please keep us posted I also think it's key to have such support around you, so you have a very good sweetie!

Andrea, Mitch will be in my thoughts for his procedure tomorrow

Donna, glad you are feeling better

Mia Mia, if you are out there, just checking to see how you are doing. Haven't seen you around lately. Hope you are doing well

JulieM

I'm still here I've just been reading more thean writing. I am still just testing foods. Its been 3 weeks and at the start of each week I write down foods I want to try and have just been keeping a really good diary of my reactions and than decide if they are worth trying again. It seems masachistic sometimes because I have gotten really sick a few times but I feel like its really important for me to test the waters right now. I want my body to get used to different foods.

I have a doctors appt tomorrow and he said he wants to discuss test results but I don't know which test he means so I am alittle anxious.

How are you doing? Hows your diet? are you still doing the histamine one?

Miamia

[Rachel--24]

Anyway, I feel like I've been left on a cliff-hanger here.

I cant even begin to tell you how I feel....its been like the longest week of my life.

I havent been this anxious since I had my Celiac bloodwork and my Enterolab tests.

Thanks for your kind words....it'll really be amazing if I get an answer after all this time but I'm also remembering that I could still end up with questions. I've had too many disappointments already so I'm prepared for that too.

[AndreaB]

Rachel,

I'm being extremely positive.

Miamia,

Please keep us posted on how tomorrow goes.

[Rachel--24]

I called the doctors office today and my lab results arent back yet.

They had given me a kit to take home...its a urine test and I havent even looked at it yet so dont even know what its for.

The nurse said they're still waiting for the results of 2 bloodtests...one of them is the Lyme test.

She asked if I'd completed the urine test...which I havent. She said the purpose of my upcoming appt. is to go over the results for these 3 tests and I will need to rescedule my appt. since I havent done the urine test yet.

I'm bummed about having to wait even longer now.