Omg...i Might Be On To Something

[Judyin Philly]

Judy, I just wanted to say hello...wow...you are going through a lot right now. I'm sorry your medical professional didn't take you seriously....why have we all gone through this?! It is so wrong.

I hope that you find some answers. I don't have much to offer right now except for support...I'm still searching, too.

xoxo,

Laura

hi Honey

Your support is greatly appreciated with all you have going on.

I've been ck'n on you hear but not posting.

we had company fly in for 9 days 2 of which i spent in bed. they were the best medicine for me and hubby took them out for fun while i was in bed.

my internist couldn't see me as he'd left the late in the day i called them but they got me in to see this lady dr the next day early am.

my internist is seeing me monday morning so hope he will be resecptive.

he's up on main stream lymes..but not sure about alternative med...he really likes my chiro tho so that's a plus.

you keep up the good fight too honey.

i just get weary but don't we all.

hugs

judy

have to get off an get leg in the pump for an hr.

[Rachel--24]

SHE WON'T LET ME SLEEP UNDER ELEC BLANKET ANY MORE AS IT WILL MAKE BODY HOT AND THUS THE YEAST 'HAPPY'

Judy,

This is not correct. Your Dr. must not be familar with candida.

Candida thrives in a *cold* body.

A weak immune system + antibiotics or steroids will allow the yeast to get out of control. Yes....this can result in fungal infections on the skin, nails and other areas. I've had it on my skin (under my breasts) and on my nails. I dont get the *normal* yeast infections...thankfully.

I'm sure that I have the yeast overgrowth due to Lyme or mercury or both.

You need to keep warm though. My Dr. told me that Lyme or yeast will lower the body temp. to make it a favorable environment for them. He told me to always stay warm, dont eat anything cold and to go to the sauna as often as I can. He stressed the fact that I need to keep my body temp. up to help fight these guys off. He also said allergies and intolerances will get worse when the body temp is low.

[Judyin Philly]

tHANKS RACHEL.

WAS HOPING YOU'D COME ON.

SO THE LOW TEMPS I'M HAVING ARE INDICATIVE OF THIS I GUESS.

THANKS AGAIN.

JUDY

[georgie]

*Something* caused me to wake up days later with that high fever and other symptoms. I had never experienced anything like it before.

Of course this is typical of a Lyme infection BUT could a sudden exposure to mercury also do this??? Can a broken amalgam leak out more mercury?? Could the swallowed piece have *done* something to me???

hmmm. Maybe ? Dentists say the mercury is inert and prefectly safe. So even bits chipped off and swallowed don't do a lot. But ...you wonder. Especially for you as you have had a removal procedure that doesn't sound safe. I have got a MOUTHFUL of amalgams. Dr wants them out. She is a good Doc.... Just so scared ... Its the pain of it all. My TMJ is trashed and I can't cope ! Once when I had root canal work done it locked open - that's scary.

And dentist is 300 miles away so would have to travel alone and stay in a hotel alone o/night or something. And as its done in sections .... could take 8 visits or more !

I think I would like them out. But want to be sure ! Dr is talking of chelation afterwards. What is that ? Did you have that done ?

Its just that I have had a constant headache for 30 years .... About the time I had the first fillings. And about the time I went Hypo.

Dr said that hair analysis can throw false neagtives too. That if you are really toxic and bad - it doesn't show. Hmmm

[Rachel--24]

Dr said that hair analysis can throw false neagtives too. That if you are really toxic and bad - it doesn't show. Hmmm

Georgie.....this is true. If you're body is not detoxing the mercury it will not show up in hair analysis....it doesnt mean there isnt mercury toxicity though.

I havent had chelation but I know its in my future. My Dr. has said it will be further down the road when my body is detoxing efficiently and I'm able to take supplements. With chelation the chelator will draw mercury out of tissue (where it stores itself) so that it can then be excreted from the body. This can be a long process and if the liver isnt detoxing efficiently it can be dangerous. Too much mercury being "mobilized" but not able to be excreted means that it will be redistributed through the body and further poisening can occur. Its REALLY REALLY important that the Dr. knows exactly what he's doing....doesnt give to high of a dose than what your body can handle and that all of your organs are functioning well before mercury gets mobilized. Immune support through supplemenation is a good idea.

As far as getting amalgams removed. Its a good idea. A mercury toxic body does not function well. The immune system is also comprominsed. Some people with Lyme cant even recover until they get rid of their amalgams.

It also can be very risky getting them removed. Again....very important to have a biological dentist who takes the proper steps to ensure that both of you are not exposed to the vapors.

I have read that having alot of amalgams removed in a short period can be harmful....too much exposure. You definately would want to space it out. As long as you have a smart dentist you should be fine. I have heard that some dentists will give IV Vit C prior to the removal to support the immune system. Some supplements can also help the immune sytem and also help with detoxing. Its ineviatble that you will be exposed to *some* vapors no matter what. This is why its good to space it out and give the body a chance to detox. Too much at once can overwhelm your immune system.

I have read stories where people have dramatic "overnight" changes of life-long symptoms with the removal of their last amalgam. Symptoms disappearing all together. Obviously mercury can have a detrimental affect on our health.

I had hoped for some great improvement like this but it wasnt meant to be. I'm not sure if its because mercury wasnt my main problem and Lyme is....or because the mercury is stored in my tissue and the damage was too severe to recover from without chelation.

Some people cant recover without chelation.

[Fiddle-Faddle]

Rachel,

I don't know if mercury could cause a fever, especially as high as you had.

I don't know specifically that mercury can cause high fevers, but a common vaccine reaction is very high fever--don't know if that is the vaccine itself or the mercury preserving it. Do babies and children still get high fevers from vaccines now that most are made without mercury>

I don't know that you can rule out mercury or Lyme at this point; seems like they are feeding off each other. Ugh.

[Rachel--24]

Rachel,

So it looks like Lyme Disease? Wow, I have so many of the same symptoms - and a ENT just said lets look at Lyme, guess he is faster than other Drs. I don't know which lab he is using but he is from a big University.

Angst,

I saw your labs....it wasnt Igenix. It didnt look anything like my results. The other labs like Quest are not very sensitive at all. They often have false negatives. People will continue to test negative even though they have a clinical diagnosis, bulls-eye rash etc. When they test with Igenix they have a better chance of getting the positive result. Igenix tests are more sophisticated and more sensitive.

Lyme is hard to diagnose through testing. Everything depends on how your immune system is responding to the Lyme at the time of testing. Some people have Lyme but their immune systems arent fighting it.....there are no antibodies in the blood to make the test positive. If the immune system isnt actively fighting the bacteria the diagnosis can be easily missed. Its ususally the people who are MOST sick from Lyme that test negative. Its because their immune system is in the dumps....its weak and no longer producing antibodies against the Lyme.

I guess I can go back a few pages. But what is BioSet? I need to get me some.

Unfortunately you cant get some at the local drugstore.

This is BioSET

Open Original Shared Link

I've been doing BioSET for 2 months now. My Dr. wanted me to go to get my body detoxing and to clear up some of my intolerances. At first I thought it was a bunch of hocus-pocus stuff and wasnt really "into it".

Now I am fascinated by it...I go twice a week. If it helps me I want to learn more about it...maybe become a practitioner myself. First I'd have to free of brain-fog though.

I always post about my treatments......I love BioSET.

[Rachel--24]

I don't know that you can rule out mercury or Lyme at this point; seems like they are feeding off each other. Ugh.

Yeah....this is what the Dr.'s are saying too. It sucks to think about. I wish I could rule one out but it doesnt seem likely to happen. Too much evidence supporting the presence of these guys. The Dr. says they help each other out....they're buddies attached at the hip. Its harder to get better when they are backing each other up. It seems like such a long process.

[Rachel--24]

Today, I got a Christmas present from my aunt, who's son has CS, and it is Williams-Sonoma Bread of the Month Club - can you believe it????

Does that not take the cake for inappropriate Christmas presents!!

How crazy is that!!

Does she know you're not eating gluten???

Does her son have Celiac.....did you mean to put C.D.??

Sorry to laugh but thats hilarious!!

[AndreaB]

Rachel,

Are you going to post about your appointment yesterday after you catch up?

[Rachel--24]

Apparently there is a new test for Lyme by Bowen that is 99% accurate, it will be released on January 1, 2007. There is information about this posted on Lyme Strategies but I have been unable to use the link a friend sent me.

Rinne.....what is the deal with Bowen?? Do you trust that lab?? I havent really read that much about them but have seen conflicting info on the lyme boards....about the Q-RIBb test.

It seems like everyone tests positive???

This is what the lab has said...

"All of the patients submitting specimens have clinical signs and symptoms of Lyme disease. We feel the explanation for the positive specimens is that this is no longer just a tick-borne infection. Bb has been found in dogs, cats, Florida and California mosquitoes, well water, breast milk, placental tissue, seminal fluid, and even African dust. It seems reasonable that everyone has been exposed to this very clever bacterium, and some individuals without symptoms may represent a carrier state of Borrelia burgdorferi."

What do you think.....now they are coming out with a new and improved version of the test.....but do you trust the test???

It reminds me of Enterolab....like testing positive is almost a sure thing.

It could be legit....it could be that the test is highly sensitive and that many of us have had exposure to the bacteria. How can we know if the bacteria is causing our illness though....if most people have been exposed to Bb??

Again...it reminds me of Enterolab. Yeah...probably most of the population tests sensitive to gluten...afterall its hard to digest and not really meant for us to consume....but is it the cause of our illness??? It doesnt seem to be in my case....it seems to be a result of my illness.

Today a customer at work told me that when her dog went to the vet they gave her dog a Lyme vaccine. She said this proves to her that Lyme is definately a problem here in CA....or why would they be giving her dog a Lyme vaccine???

Ummm...I guess this also proves that we would be better off seeing veterinarians because they obviously are much smarter than most doctors.

[Rachel--24]

Rachel,

Are you going to post about your appointment yesterday after you catch up?

LOL...yeah....can you tell I'm desperately trying to catch up??

[Rachel--24]

Tune in tomorrow for the next episode of Rachelville! Doesn't it sound like a soap opera around here?

Yeah....its been a soap opera since around page 50.

Carla...have you noticed how we keep changing our minds about everything?? I dont know if its denial but its kind of amusing to me. I guess since we are women we are allowed to change our minds from day to day.

Who knows what I might be thinking tomorrow???

Today I have changed my mind about the antibiotics AGAIN. I think I might want to the challenge afterall.

[linds]

hello all! I am back. I have been waiting for my test results and they are all back and they are ALL negative!! it is so frustrating. They did a stool sample, the celiac panel (even though i have been gluten free for a while), tests for the pancreas and thyroid. I don't know where to go from here. I am thinking about just trying gluten to see what happens but i am not sure. Any ideas would be great. Thanks

[Rachel--24]

I suspect that the mercury either opens a door (physically) because it crosses the blood-brain barrier, or it acts as a catalyst somehow. Could it have the same relationship for Lyme in your case?

Also, could a past MMR shot be playing a role for you? I vaguely remember you mentioned something about thinking about a pregnancy in the past (was that you?)? My doctor wanted me to get an MMR shot before I got pregnant (which, thank God, I didn't do, we did a titre instead and I was immune). Did you have any boosters in the year or two before you got sick? Or any other vaccines? (You probably already discussed that 600 pages ago, sorry if I missed it!

Alison,

Mercury really is a catalyst for Lyme. If I can be 100% sure I have Lyme (need more positive tests)....I think I can be 100% sure that mercury set it off.

I dont know what the MMR shot is?? I dont know a whole lot about vaccines.

I was trying to get pregnant but I never had any shots during that time.

I didnt have any kind of vaccines or shots. I actually never went to the Dr.'s for anything prior to this illness. I would have rated my health (on a scale of 1-10) as a 15. Now it is more like a 1 or 2.

It really blows me away....I actually used to feel like I was invinceable. I never got sick...I never broke bones...I never had problems with anything. I got hit by a car when I was 15....it was pretty bad....I flipped up in the air like a gymnast and came down head first on the windshield. My head broke the windsheild.

I had a concussion and that was it...my knees were skinned pretty good but no broken bones or anything. I have no memory of it....woke up at Stanford trauma center later that day. 3 of my friends witnessed it and thought I had been killed....I was OK though. Even for being a tomboy I've never had a broken bone or even stitches. Getting sick like this never even seemed possible for me. I never even got colds. Yeah....I still cant believe it. I miss my life though.

I was thinking if I had an underlying issue all my life it would have come out when I was hit by the car...since it was a traumatic event. It would have triggered Lyme or whatever else may have been lurking inside me....but I was FINE...after the scabs on my knees healed and I could walk normal again.

Whatever happened had to of occurred later on...most likely when I got that fever and massive headache. It was just totally abnormal for me. I dont get fevers.

I *think* I had gotten a tetanus shot a few years prior to getting sick. I'm almost positive they gave me a tetanus shot. Is that the one that you are required to get after so many years?? I think I was due for it and they gave it to me. I dont recall anything happening after the shot though. I think everything was still normal for me. Could a tetanus shot get you sick?? I have no idea about shots and vaccines and whats in them.

[AndreaB]

Ummm...I guess this also proves that we would be better off seeing veterinarians because they obviously are much smarter than most doctors.

I think that's one reason I like dogtor J's article.

Who knows what I might be thinking tomorrow???

Today I have changed my mind about the antibiotics AGAIN. I think I might want to the challenge afterall.

Um, do you want to do antibiotics if you aren't detoxing? Won't that do something to the lymies?

[Rachel--24]

hello all! I am back. I have been waiting for my test results and they are all back and they are ALL negative!! it is so frustrating. They did a stool sample, the celiac panel (even though i have been gluten free for a while), tests for the pancreas and thyroid. I don't know where to go from here. I am thinking about just trying gluten to see what happens but i am not sure. Any ideas would be great. Thanks

Hey Linds!!

I had wondered how things were going for you....glad you posted about your results.

Maybe others will have some suggestions for you. I know you probably dont wanna hear this but I still think you should get a Lyme test from Igenix. Your history with ticks, your location and your symptoms make me very suspicious. I would hate for it to be something like this and for it to progress....especially since you are so young.

Thats just my 2 cents.

I'm sorry the tests didnt show anything...I know how frusterating that is!!

Are you still reacting to alot of foods?? If you are I dont know that eating gluten will really tell you anything. I think its best to stay off the gluten. In my opinion gluten isnt good for *anyone* who's sick...especially when digestive symptoms are involved. Even if gluten isnt you're main cause of illness...I think you will still feel worse eating it.

[georgie]

Georgie.....this is true. If you're body is not detoxing the mercury it will not show up in hair analysis....it doesnt mean there isnt mercury toxicity though.

I havent had chelation but I know its in my future. My Dr. has said it will be further down the road when my body is detoxing efficiently and I'm able to take supplements. With chelation the chelator will draw mercury out of tissue (where it stores itself) so that it can then be excreted from the body. This can be a long process and if the liver isnt detoxing efficiently it can be dangerous. Too much mercury being "mobilized" but not able to be excreted means that it will be redistributed through the body and further poisening can occur. Its REALLY REALLY important that the Dr. knows exactly what he's doing....doesnt give to high of a dose than what your body can handle and that all of your organs are functioning well before mercury gets mobilized. Immune support through supplemenation is a good idea.

So my Dr wasn't talking rubbish ? She has been good at everything else so guess I should trust her on this but always am suspicious of long term therapies. This chelation sounds a nightmare ! What happens if you start and find that your liver can't cope ? I know my Thyroid isn't working properly and that a major detox organ as well. Yikes.

And ...can anyone answer this ? I know that mercury has to be removed with a special dentist but why are no precautions taken when a normal dentist does repairs to th fillings ? When one chips ...they sand it down and file it, and then add more.....

Wouldn't that be bad ???

linds, Triple check that Thyroid result. Did all the tests get done ?Or was your Dr one of those morons that only does TSH.

Ummm...I guess this also proves that we would be better off seeing veterinarians because they obviously are much smarter than most doctors. rolleyes.gif

My vet knew all about extra Thyroid testing and not my Dr ! He knew that TSH of 2.2 was suspicious and needed Free T4 and Free T3 tested !!! :lol:

[DSoldano]

I know someone who suddenly developed an intolerance to corn, yes that really has to be hard.

If you are a biospy dx celiac then I would continue on a gluten free diet as well. Call your doctor and ask about tests that could be done to see if they show an intolerance to corn.

It can come out of nowhere.

Donna

Well I've been struggling for quite some time now. It doesnt matter what I eliminate I'm still sick. Its like it HAS to be something that is constantly in my system because I havent had a single symtom-free day for over 3 years now. Even when I limit myself to 2 safe foods I'm still having symptoms so basically nothing has worked. All meds or supplements have worsened my symptoms. All gluten-free packaged foods bother me. I toatlly eliminated casein and still have problems. It was only one supplement I was taking that had milk in it so I stopped taking it...felt better...started eating more foods and totally symptomatic again.

I was eating Enjoy Life chocolate chips with no problems..also did some baking...no problems. I had one cake mix with all safe ingredients and reacted. The mix only had like 4 ingredients and I tolerate all of them...the only questionable ingredient is Xanthan gum. Its also in every gluten-free product I've reacted to and also rice milks and almond milks and a ton of other stuff I cant have. I found out its from CORN. I never thought about corn...but its in everything. Even when I'm only eating meat and veggies (no corn) I'm still having corn everyday in my thyroid meds and any supplements or vitamins I've ever taken most likely have corn.

Pre gluten-free I never ate much candy or sweets....my favorite snacks were popcorn and Tostitos. These were also the first foods I started avoiding long before I ever heard of gluten because the next day I always had a swollen face and a migraine. I had thought it was from the salt or something. I thought everything was thyroid related since I had Graves so I started avoiding all salt.

I did some research on corn and its in pretty much everything...seems more difficult to avoid then both gluten and dairy. Today at work (I work in a grocery store) I started reading all the labels of the foods I used to eat before I got sick. They ALL have corn. Its in bread, soups, microwave dinners, yogurts, cheese (why is corn in cheese?). Anyways, I've never been corn-free because of my thyroid meds and lots of other things I've tried over the last year. I had posted about getting "glutened" by all the gluten-free cereals. Well they are all corn based....DUH. I dont know why I never thought of this since everything I've had problems with have some form of corn in them.

I really need to eliminate the corn to see if I get better but dont know how I can do this when I need to take thyroid pills everyday. What do people do in a situation like this? What if I'm intolerant to corn all this time and its in the medication I need to take?

The other big question is am I really intolerant to gluten and dairy? If I get better off corn I dont know what to think about that. All the foods that have gluten also have corn so I would likely have to stay off gluten anyways....hmmm...does pizza have corn in it?

Also yogurt and ice cream really mess me up but they also have corn. There ARE some brands and flavors that dont have corn so I would LOVE to not have a problem with dairy!!

I would rather be intolerant to corn and gluten both than have to give up dairy for good.

Does anyone have a corn intolerance? Could I have just developed this out of nowhere and NOT have gluten intolerance...or is it more likely that gluten caused this to happen in the first place? I'm actually hoping I'm corn intolerant cuz as hard as it seems I've been struggling a long time now. The symptoms I've gotten from the stuff I've eaten with xanthan gum are severe....also I had powdered sugar yesterday and had another severe reaction. I have no reaction to cane sugar but when I looked at the ingred. of the powdered stuff its cane suger AND corn starch! Right now I feel exactly like I felt before I ever went gluten-free...everything hurts. This would explain why I dont do well with anything processed or with any supplements or vitamins or medications.

I dont see too many people here with corn problems but hopefully someone has some advice about the thyroid meds??

[Rachel--24]

Um, do you want to do antibiotics if you aren't detoxing? Won't that do something to the lymies?

It will kill them and make me HERX badly if I'm not detoxing. I would be doing it for a good cause though. To see if my Western Blot indeterminate bands go positive or to see if the dead lyme bacteria particles can be found in my urine.....cuz I need *more* PROOF.

LOVE all of the new pics of the kids Andrea!! They came out really nice.

[angst2amity]

Rachel & other Medical geniuses,

I stole that lab form off of the university site - they indicated it was a mail-away test, I am just hoping it is to Igenex. But if anyone was going to show lyme, I think I will right now. So many neurological problems, on steroids on antibiotics, doing worse everyday. Lost 10lbs in about 4 days. Quit my job, quit any community boards I am on. Cancelled Christmas.

I only can really open my eyes at night - the farthest away from steroids as I can be. My brain is so swollen. I actually called my life insurance company today thinking that I would up it before I got any diagnosis.

But, I hear these new despairing thoughts can be related to Lyme.

Sorry to bring a low note to the board. Maybe there is still hope.

Anyone hear about Ledum the dog lyme treatment?

THanks!

PS I put CS for Celiac Sprue, is celiac disease better? He was biopsy-diagnosed I believe. He just isn't following the diet. It is hard to talk to the Mensa People in my family - they don't hear sometimes.

[AndreaB]

Sorry to bring a low note to the board. Maybe there is still hope.

We are here for good/bad days; happy/sad days and everything in between and on either side.

No apology necessary.

[happygirl]

Angst,

"Celiac Sprue" is kind of an "older" term....most people today refer to it as Celiac Disease (esp on this board) or C.D. (hence the confusion with CS)

Laura

[Rachel--24]

So my Dr wasn't talking rubbish ? She has been good at everything else so guess I should trust her on this but always am suspicious of long term therapies. This chelation sounds a nightmare ! What happens if you start and find that your liver can't cope ? I know my Thyroid isn't working properly and that a major detox organ as well. Yikes.

And ...can anyone answer this ? I know that mercury has to be removed with a special dentist but why are no precautions taken when a normal dentist does repairs to th fillings ? When one chips ...they sand it down and file it, and then add more.....

Wouldn't that be bad ???

Yeah...its bad but they dont care cuz they are ignorant. The ADA says that mercury is safe and they stand by this...alot of dentists dont use amalgam anymore...I think its being slowly phased out. The ADA now acknowlegdes that mercury *does* leak from the fillings but they still claim its harmless.

If a traditional dentist tells a patient that amalgams are dangerous they are at risk for losing their liscence. So.....they will NEVER tell you that there is risk involved. Also I think that most actually believe the ADA because this is what they are told...my dentist seemed completely ignorant about mercury. He said the stuff regarding mercury coming from amalgams was all propaganda....he was citing everything that the ADA says regarding how "safe" it is. MORON!

Its a fact that dentists have the highest suicide rate. They are not protecting themselves from the vapors as they're drilling into these fillings. Autopsies from dentists who have comitted suicide show large amounts of mercury.

I saw a video about the effects of mercury....it was astonishing! They had placed an amalgam filling into the mouth of a perfectly healthy sheep. I think it was 6 months later that they removed the filling and found that more than half of the mercury that the filling originally contained was gone....it had leaked from the filling.

It was found in the organs of the sheep. It was largely in the brain and liver but other organs and tissue also contained mercury. This was only ONE filling and it was only in for SIX months!!

There were pictures in the video.....showing the areas where mercury was found. The areas were "blackened"....it was crazy to see how much of this sheeps organs were now toxic with mercury.

Really scary stuff.

They also showed how mercury gets released from fillings everytime you chew, drink something hot, grind teeth, etc. They had an amalgam and they rubbed it with an eraser to simulate "chewing". You could *see* the vapors coming off the filling! They had some x-ray type thing so that you could see the vapors. Prior to them rubbing it with an eraser there was a very small amount of vapor coming off the filling.

To demonstarte the affects of hot liquid they dunked the filling into a cup of hot coffee. After this the vapors were coming off of it like smoke.

What really worries me was that I kept *feeling* some kind of vapors or "hot air" coming out from underneath one of the gold crowns the dentist had put in. I could taste metal and kept feeling this hot air all around that crown. It actually seemed like some force was trying to *push* the crown out of place. I think it was being pushed out because I had to keep going back to the dentist to have it sanded down because it was messing up my bite. Everytime he would sand it down so that my bite was level....a couple weeks later the crown would be affecting my bite again. He had sanded it down so many times that the crown ended up breaking and having to be replaced.

Something was definately happening. I think he may have left some amalgam underneath that crown and the two metals were causing galvanic reaction and a high release of mercury.

[Rachel--24]

Sorry to bring a low note to the board. Maybe there is still hope.

Hey....this is a place where we can say what we want. We have good days and bad days....no need to apologize for anything!

About the steroids.....are you taking them?? Steroids are the WORST thing you can take if you have Lyme. They will drive the Lyme further into your body. If you were taking steroids and got worse this could be why.

I hope you are not taking steroids still.

If you think you could have Lyme and test negative it doesnt mean you dont have it....especially if you are using a lab other than Igenix. I think they are less than 60% sensitive....not good at all. I think Igenix is over 95% sensitive.

Ahhh...Celiac Sprue!! Ok....makes sense now....I had thought it was a typo.