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Omg...i Might Be On To Something


Rachel--24

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tabasco32 Apprentice

Rachel I believe I have 5 leaking. Do you mean that getting the almagams out isn't going to make me better and I will always be sick like this and I will never be normal? Or do you mean I have to do more to get better?


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Eriella Explorer

I completely understand, I am allergic to corn syrup. It is in EVERYTHING!!

Rachel--24 Collaborator
Rachel I believe I have 5 leaking. Do you mean that getting the almagams out isn't going to make me better and I will always be sick like this and I will never be normal? Or do you mean I have to do more to get better?

Lisa....noooo...I did not mean you will have to stay like this forever....of course you can get better. :)

We can all get better. It does take time and yeah....you will have to do more than just remove the amalgams....although once you do remove them you might notice some improvement. The main thing is that the source of the mercury is removed...so you wont continue to have mercury leaking out and getting even worse over time.

Obviously, I cant tell you everything that you've got going on....a good Dr. who's knowledgeable about mercury can help you figure everything out.

If you have a heavy burden of toxicity from mercury and other toxins that have accumulated...those toxins will remain even after you get the fillings out. The mercury that is stored in your tissue and your cells just stays in the body....and the candida stays with it. This is what I'm dealing with right now...getting the mercury and other toxins out of my body so that I can get my health back.

As long as the mercury stays in the body....the problems it causes dont go away. Unfortunately mercury does stay in the body...and it needs to be treated with some type of detox or chelation.

I just didnt want you to think that it was as easy as getting the fillings removed and all goes back to normal...you do still have to work to remove whats left behind after the amalgams are gone.

I was very certain I got poisoned but when I got all of the metals out and didnt recover....I kind of gave up on it for awhile because....for one thing I didnt have good Dr.'s who could help me with this....and also I thought maybe it wasnt mercury afterall since I didnt regain my health after having the amalgams removed.

I've learned alot since then and now I know that the reason I didnt recover was because I didnt do anything to remove all of the heavy metals that are still sitting in my body 3 years later. The problem doesnt fix itself...and I would never get better if I just leave everything "as is". So now I have good Dr.'s and I'm starting the treatment.

So yeah...you will get better...you just have to do more to get there.

I dont know how long you've been sick but getting the leaky fillings out is the right thing to do....for sure.

AndreaB Contributor
Rachel I believe I have 5 leaking. Do you mean that getting the almagams out isn't going to make me better and I will always be sick like this and I will never be normal? Or do you mean I have to do more to get better?

Lisa,

Getting them out will keep you from poisoning yourself more. You would have to go through some form of chelation. I found bio-chelate online, there is also NDF which Rachel is taking, then you have DMSA or DMPS. I'm assuming that DMPS is primarily used for challenges and then DMSA would be used for chelation but I'm not sure. That's the way my doctor works it anyway. Chlorella is good and could help but doesn't cross the brain barrier, plus it's probably slower than you'd want to go. :unsure:

You will get better as you move the metals out. It needs to be done with a doctor/doctor supervision to make sure your kidneys and liver are handling everything and they typically have something to take for support of those organs.

diamondheart Newbie
Hi girls and boys,

I am so sick of this and food intolerances, bladder pain, constipation, all this. I weigh 98 pounds now.

Well my naturopath called me yesterday and left a message. For those of you that know I took a mercury urine test with DMPS. She said that my mercury level was high. I called her back and told her I was taking seacure. She said even If I was eating fish and taking seacure that it still shouldn't

be as high as it is. Does this explain all of this that I am going through? She says now I need to go to a special dentist and fix my teeth. THen the dextoxing will start. Does this make sence or are my hope up high? Any opinion on this. I don't know if I want to start with dentist and stuff if this isn't

what is really making me sick. But then it couldn't hurt right?

Lisa

Hi Lisa,

My understanding is that if you take DMPS while you still have mercury amalgams, it will just pull the mercury out of your fillings to give you a positive test. You might want to clarify that. That's why I haven't bothered to do the test while I still have my amalgams in. I'm not sure how you tell if your fillings are leaking.

Have you had a hair analysis done? It's not perfect either. It just tells you how much mercury your body is excreting, not how much is stored in your system.

Claire

AndreaB Contributor

Good point Claire.

Maybe you could get your amalgams taken care of Lisa and then do the DMPS challenge along with a hair analysis. My doctor uses both those to get a good idea of what's going on. I've done the hair analysis last year and based on that he thinks I have problems with metals but he won't do anything until we do a challenge. I'm not sick so don't really like the idea of DMPS. I'll have to discuss options with him when I'm able but we have a lot of things we want to do, amalgams out being the first.

NoGluGirl Contributor

Dear Erielle,

Corn syrup is a serious problem for a lot of people. I feel icky when I eat it a lot of the time. I can tolerate it in some things, but by itself it is too sweet or something. My best friend's brother used to be allergic to corn! He outgrew the allergy, luckily. Corn syrup is really cheap, so they use in instead of cane sugar.

Sincerely,

NoGluGirl


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tabasco32 Apprentice

So basically I took the test for nothing?!? I have to do it again? I don't get it. I feel like now I want to give up. :( So if this isn't what's getting me sick then WHAT CAN IT BE!

AndreaB Contributor
So basically I took the test for nothing?!? I have to do it again? I don't get it. I feel like now I want to give up. :( So if this isn't what's getting me sick then WHAT CAN IT BE!

Lisa,

I don't believe you took it for nothing. The numbers just wouldn't be accurate. It is still best to get your amalgams taken care of if you can. Did you doctor tell you what your numbers were?

Don't give up. Keep pushing forward and you'll regain your health.

CarlaB Enthusiast

I just had my phone consultation with my LLMD's assistant.

First, she said to bring Chloe up there with me for a modified consultation so that they could order the bloodwork. There is an ethical problem with doing the blood test without seeing her ... if they do it and it's positive, they would ethically need to give her immediate care, which they wouldn't be able to do if they had never seen her. I went through the Lyme symptoms with Chloe, she has so many that I wanted to start there with her.

The doc's assistant was concerned about the constant d I've been having since starting the Omnicef and Probenecid. She had me stop all medication for a few days to see if the d goes away. If it doesn't we'll need to test for c difficile, but I anticipate it will because it seems linked to the new meds. She's going to use billicin injections instead. Adam is thrilled to have to give them to me <_< (said sarcastically).

She's also changing me from doxy to mino. She said mino still has some sun sensitivity, but not the burning problems the doxy has. But, since I'll be on neither of them in Phoenix, I'm allowed to be out in the sunlight! She said it should be out of my system by Sunday!! :rolleyes:

She's also starting me on Planquenil, an anti-malarial, to work with the other anti-malarials I'm taking.

She was very pleased with the fact that I'm feeling better and thinks the last herx along with the sauna really helped. She'll be changing a couple other things around next month when I come into the office, mainly the anti-protozoal/malarials. She said she thinks we're making progress with the babesia.

My hemoglobin tested at 12.7, with under 12 being too low. I take iron every day. The doc had told me to stop my supplements and take the ones he recommended, so I had temporarily stopped the iron. I started getting RLS, which I've always gotten when I get anemic, so I started the iron back on my own. Obviously I need it, 12.7 isn't very high ... I've always felt better if it was about 14. Anyway, she told me that they've JUST made the connection between iron stores and RLS and she asked me if I figured it out on my own. Amazing what we learn if we listen to our bodies!

From what I can tell, low iron is a result of babesia. I've taken iron for close to 20 years! :o

I feel really positive about this appt. and about the recent progress I've made. She seemed really pleased with the progress ... it seemed to be an important sign to her.

So, I'm off the meds for my trip to Phoenix! My friend told me she felt the best she had ever felt her week off meds, so I'm excited! She said she quickly started going downhill again, but that first week was great. I'm supposed to take the mepron and biaxin with me, but I can't remember under what circumstances I'm supposed to start taking it again .... I left a message for her. I guess we want to stay on top of the babs.

happygirl Collaborator

Thanks for the update, Carla. I'm so happy that the treatment seems to be working, albeit slowly. I hope the d goes away.

You deserve all this good news and a wonderful trip!

dlp252 Apprentice

Thanks Carla...I'm reading every update with great interest these days, lol. (That goes for everyone, lol).

AndreaB Contributor
I just had my phone consultation....

Wow Carla! Sounds like a good consultation.

Enjoy you're brief time off of everything and your trip to Phoenix.

Will you be taking Chloe with you next month when you go in? I'll be curious how that progresses as well.

That's interesting about the iron as well.

CarlaB Enthusiast

Thanks everyone.

Yes, Chloe will be going up there with us next time. I'm interested to see how that works out, too. If she does have it, this will be good timing as she'll have all next year to go through treatment before high school.

Laura, it's been a while since we've heard how your treatment's going ... how are you doing?

NoGluGirl Contributor

Mia,

I see you! :P

Dear Carla,

That is good you seem to be making progress. I do not blame you for going back on the iron. Those levels are low. If it feels right, do it! That is what I say! :)

The D could be caused by the meds. Antibiotics are not easy to deal with in the intestines. They kills the good and bad stuff. They do not know the difference between good and bad bacteria. Antibiotics kill it all!

I do not know what I will do if I have Lyme and Babs. I cannot tolerate Biaxin or a lot of the other drugs they put people on. I tolerate maybe four antibiotics. When I was young, arithromyacin was the one they used all the time for me. As I got older, I took Zithromax and Amoxicillin. Doxycycline or Tetracycline do not set well at all. Flagyl was pure misery as well. If possible I would prefer an herbal protocol.

DART UPDATE

Well, our baby has had seizures for up to two hours non-stop the past few days. He had a seizure today. It was shorter in duration. Ten minutes is much better than an hour or two hours! We took him to the vet the other day.

The vet believes it is food sensitivities. He is on prescription food for dogs with liver trouble. Plus, he is on medication. He has to take amoxicillin twice a day, along with Lactulose, and Potassium Bromide. Keep your fingers crossed! I took a great pic of him last night. I will try and get it on here so you can see him!

Sincerely,

NoGluGirl

tabasco32 Apprentice

Hi Carla,

I'm sure you know about getting iron in your body from cooking on an iron skillet? My mom at her clinic tells her pregnant patients to do this that are low in iron.

CarlaB Enthusiast
Hi Carla,

I'm sure you know about getting iron in your body from cooking on an iron skillet? My mom at her clinic tells her pregnant patients to do this that are low in iron.

Thank you, I use nothing but cast iron! I think it's the easiest thing to cook on ... the most difficult part is picking the pan up out of the cupboard! Washing them is a breeze ... well, you don't really "wash" them, just rinse and dry with a paper towel ... yes, mine are seasoned THAT well!! ;) Thanks for the suggestion.

Jin, that blood test was done while I was taking iron. Can you imagine how low it would be otherwise?! I went off the iron like the doc said, but within a week had RLS and started back up. I learned the connection between RLS and iron when they'd take my iron so often when I was pregnant ... if I was having RLS, it would be low. Looks like I could use a little more, but I'll just keep it here for now.

Babesia affects the red blood cells, so this is common with babs.

You could be sensitive to antibiotics that treat Lyme BECAUSE of Lyme! What kind of symptoms do you have? They could cause a herx, which would make you think that you were reacting in a negative way to the antibiotic when in fact the antibiotic is killing bugs and the die off is making you ill.

I started having the GI problems the day after I started the Omnicef and Probenecid, so I am expecting it to clear up now that I'm getting off those. I'm taking A LOT of probiotics -- Theralac, Ultra Flora, and VSL#3. It takes a lot to counteract the effects of the drugs ... I'm just happy the drugs are doing their job!! YAY!

dlp252 Apprentice

Okay feel free to skip over this if you're not in the mood for completely irrational, insecure doubting wailings and whinings :lol:

I am driving myself crazy (be thankful you don't have to live with me :lol: ) with doubt...what if this isn't lyme. What if whatever makes my watch batteries die after only a couple of months made Scott pick up lyme when it really isn't there? What if after spending all this money it isn't lyme. Egads, I need a drink or at least a chocolate bumble bar, lol. After spending all this money what if it IS lyme and I have to get treated and spend all that money. :lol:

See what I mean...this all came suddenly out of nowhere...okay, well maybe it was after reading a thread on LymeNet and the fact that I had to call for directions to get to the place on TUESDAY. :lol: What if the blood test is so negative that the doc can't even make a clinical diagnosis?

Someone slip me a MyoCalm PM :lol:

Okay...I think I need a hot water bottle. :lol:

CarlaB Enthusiast

Donna, don't sweat it until you get tested and see an LLMD. No sense worrying about "what ifs" ... that would give us ten times as much to worry about than what's already on our plates!! ;) Just worry about what you already know about.

But, go ahead and drink a Jack and Coke for me before you stop your worrying! It's going to be tough next week not having drinks at business dinners! :blink: Especially since I might try to justify drinks and desserts with the fact that I'm not on any meds. :P Actually, then I'd just feel like garbage, so I'll have no more than a sip or two of Adam's. ;) I didn't work this hard to make progress for nothing!

Another good day again today. This is really strange. I don't feel like I used to feel, but I haven't felt this good for more than two years ...even though I've been sick this time for four years, it's only the past two that have been really bad.

AndreaB Contributor
Okay feel free to skip over this if you're not in the mood for completely irrational, insecure doubting wailings and whinings :lol:

Hugs Donna.

I understand the unsurety about the money for testing and then coming up with more for treatment. At least if you get the test done you can go from there, even if you have to hold off any more treatment than you are doing now until you can save a little bit.

I've thought about that even for us. Instead of paying off a credit card we're getting my teeth done. Next year I want to do ART but we wouldn't be able to swing treatments if any are needed. I just want to make sure nothing besides the supposed metals are a problem.

It's entirely possible that Mitch could have got bit in PA and we are assuming his dad had lyme not

ALS. I've been to PA but didn't get bit to my knowledge. I never have hiked, (aside from a few walking/hiking trails here in WA) so it's not a problem with that. I was either at my friends house or we were galavanting around the country and I was learning to ride horses properly (they jump over there :) ). That summer I only spent 10 days at home. Horsecamp, Pennsylvania and Florida took up the rest of the summer. That said, I would be surprised if any of us have it but if it's epidemic then maybe we do and our immune system is on top of it. I still think mercury (or pregnancy) triggered my celiac. Who knows about the kids.

I'll just be happy if we can detox/chelate or whatever and at least have Talitha and Seth not be so sensitive to some foods. That's assuming the metals are behind the intolerances.

NoGluGirl Contributor

Dear Carla,

That is very frightening with the iron levels! Especially considering you were taking supplements! If you had not taken them, you could bleed to death with the slightest prick! :( I have a feeling I could be anemic again. This constant breakthrough bleeding cannot be good!

I cannot tolerate iron supplements. I can tolerate eggs and spinach. Blackstrap molasses is a great source, although I do not like molasses. If it helps my iron levels, though, I will take it! Alas, poison is sweet, and medicine bitter.

Regarding the Lyme and herxes, there are quite a few I do not tolerate. All of the Cyclines cause severe gastrointestinal distress. I cannot have Tetracycline or Doxycycline. Also, Biaxin did not treat me well. Flagyl put me through the same misery.

All of the above medications gave me terrible nausea and diarrhea. It was absolute misery. I had to dope myself up on Phenergan everyday for a while. The side effects or herxes, whichever they were could not be dealt with. What do you think? Herxes or allergic reactions?

Dear Donna,

It is okay, we can all be paranoid and whiny together! ;) I have been having some odd ideas lately myself. I actually got the rediculous notion to get my hair done like Jennifer Aniston. I would probably look weird. I am not sure it would suit my features. What do you think?

Sincerely,

NoGluGirl

dlp252 Apprentice
Actually, then I'd just feel like garbage, so I'll have no more than a sip or two of Adam's. ;) I didn't work this hard to make progress for nothing!

Another good day again today. This is really strange. I don't feel like I used to feel, but I haven't felt this good for more than two years ...even though I've been sick this time for four years, it's only the past two that have been really bad.

I'm so happy to hear that you are feeling so good! That's encouraging!

It's entirely possible that Mitch could have got bit in PA and we are assuming his dad had lyme not

ALS. I've been to PA but didn't get bit to my knowledge. I never have hiked, (aside from a few walking/hiking trails here in WA) so it's not a problem with that. I was either at my friends house or we were galavanting around the country and I was learning to ride horses properly (they jump over there :) ). That summer I only spent 10 days at home. Horsecamp, Pennsylvania and Florida took up the rest of the summer. That said, I would be surprised if any of us have it but if it's epidemic then maybe we do and our immune system is on top of it. I still think mercury (or pregnancy) triggered my celiac. Who knows about the kids.

I'll just be happy if we can detox/chelate or whatever and at least have Talitha and Seth not be so sensitive to some foods. That's assuming the metals are behind the intolerances.

Well, my chances for exposure were probably a bit more just from all the hiking I used to do...most of it through grassy areas or wooded/grassy areas. I also used to paint, and took several classes outdoors...all of those were in grassy/wooded areas in the hills around here. Forgot I went camping up near Guernville(SP?) way up north in Cal. Also camping (in tents and tent cabins) in some of our wooded areas around here like Big Sur and Big Basinm but did do some hiking through the woods.

Been hiking in Hawaii, been hiking in Guatemala...

Still, my exposure doesn't seem that great...we'll see.

I actually got the rediculous notion to get my hair done like Jennifer Aniston. I would probably look weird. I am not sure it would suit my features. What do you think?

Her hair always looks great...I don't know, judging by the picture you had up you could probably wear your hair in most of the styles she had had.

CarlaB Enthusiast

Jin, my LLMD just took me off a couple meds and on something new because they don't want me to have the GI symptoms. They put me on billicin injections ... I'll start the end of next week ... I told them I'd rather the mild D from the Omnicef, but they said that wasnt' an option. So, if it's GI symptoms, those won't work for you.

I'll be totally off the cyclines when I'm in Phoenix, so I'll be able to get a little fresh air and sunshine! :) I start back on the meds when I get home.

If I have symptoms flare-up while I'm off the meds, I am supposed to take the Mepron and Biaxin, as long as I don't have GI symptoms. I think as soon as my GI symptoms go away I will have to start those ... I had a sweat last night and I'd only missed one dose!

CarlaB Enthusiast

Jin, Jennifer Aniston has naturally wavy hair that's thick with a lot of body. In your picture your hair looks very straight. Is that how it is naturally? If so, I would copy a star that has your hair type rather than Jennifer Aniston. Her hair lays the way it does because of the natural waviness that she has blown straight.

My hair stylist has straight hair. She wears a few long layers in the front, but has the back all one length. It's kind of a variation of the style Jennifer Aniston has, yet it looks very different because of the straightness. I wouldn't get the back layered if it's straight.

I'm not saying straight or wavy is better, just that a style will look different for a different hair type.

NoGluGirl Contributor

Dear Carla and Donna,

I wanted to copy the color as well as the style. I am afraid my features would not look right with it, though. That is what I am worried about. Many people think I am Asian by looking at me, and I do not want to get it done and it look bad. I look like my great-grandmother. I am supposed to be Irish, English and Scottish, but I wonder if there is something else in there! :blink:

My hair was really short back in high school. I had a pixie cut. When it grew out, it would look terrible, though. I could not afford to go to the salon very often. Even when it was shoulder length, it would curl some. One hairstyle I had in high school made my hair grow out in banana curls that I could not do anything with! They went crazy! Even worse, we were not allowed to where hats or bandanas.

You would not believe how we look exactly alike. Everything except the hair length and eye color are identical. That is why I am not sure the coloring would work. I do not think my features would go with it. This is why the decision is so tricky.

Dear Carla,

Regarding the antibiotics, the GI symptoms are not tolerable! I do not know what I could do if I have Lyme. If possible, I would like to have an herbal protocol. I do not like meds, they do not agree with me hardly at all! Zithromax and amoxicillin are two are I tolerate the best.

When I was young, about three, we found out I have an intolerance to sulfa and cychlor drugs. I got a rash with them. GI symptoms accompanied it. No more of those! I also cannot take Cipro. Boy would I be screwed with anthrax! :(

Sincerely,

NoGluGirl

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    • trents
      You are welcome! We frequently get similar comments. Knowledge about celiac disease in the medical community at large is, unfortunately, still significantly lacking. Sometimes docs give what are obviously bum steers or just fail to give any steering at all and leave their patients just hanging out there on a limb. GI docs seem to have better knowledge but typically fail to be helpful when it comes to things like assisting their patients in grasping how to get started on gluten free eating. The other thing that, to me at least, seems to be coming to the forefront are the "tweener" cases where someone seems to be on the cusp of developing celiac disease but kind of crossing back and forth over that line. Their testing is inconsistent and inconclusive and their symptoms may come and go. We like to think in definite categorical terms but real life isn't always that way.
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      Thanks again everyone! Twenty mins on here way more helpful than both Dr's combined 😅
    • trents
    • trents
      I would go for four weeks to ensure a valid test, if you can tolerate it, that is.
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