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Rachel--24

Omg...i Might Be On To Something

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Everyone,

I just got an email from a teacher at online school and she was so sweet, she said:

That is very sweet and refreshing. Certainly takes some of the stess off you.

I complain the store is less then a mile away that we shop at lol. I cant imagine driving 40 minutes to shop. But if we had a whole foods that was 40 miles away i might be tempted to enjoy going that far to shop lol Even tho my diet is so basic now i can shop anywhere lol

Whole Foods, Wild Oats and Lingonberries (gluten free store) are all 30-40 miles from us. We do go to a heatlh food store about 15 miles from us once in awhile.

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Thought I would fill everyone in on my dr. visit today.

He thinks lyme *might* be an issue although he is leaning more towards environmental exposure. If I decide to test for lyme he does use Igenex.

He thinks that I have been exposed (due to some of the stories I told him) to many enviromentals. This house has been a big factor and we moved here in 2001. I haven't been the same since it seems. The house was in terrible shape and we have done many renovations. In the living room we tore out the walls and found rot, dry rotted insulation, a million dead ants (he wonders what killed them?) and rotten walls that were wet and possible moldy. My husbands friend tore this all out creating this huge smoke cloud of dust. It was awful. I was pregnant.

Around the same time, still pregnant, my hubby tore out all kinds of old musty dusty stuff in the basement to make room for his "door shop". He was not careful in this venture either.

When we moved in here, we had these HUGE outdoor roaches coming in the house and he had a *friend* come over and do pest control and he sprinkled all kinds of toxic pesticides all in our basement and around the house. Maybe even ddt.

Later when I was pregnant, I vaccuumed this up (in the basement) and bleached the walls down there. Bad idea.

This doesn't include all the painting and other odds and end stuff I do around here.

Then, to top it off, my husband exposed us to formaldehyde by cutting it in his shop. NOw, he has a heavy duty air cleaner and dust collector down there. But one day about 2 months ago I came home and I could smell the MDF board smell. They had cut forums for doors all day out of this MDF (medium density fiberboard) and the dust particles are very fine. I turned on the attic fan which can clear the house out in a second. The smell did not go away until about 8 hours later. I had wierd dreams that night and a funny feeling in my head. It wasn't good. I layed down the law that he was NEVER to cut that stuff in our basement or yard again.

My grandparents owned this house previously (both died of cancer....hmmm...) and there is an old bag of DDT sitting on a shelf in the basement. who knows how much they sprinkled around the yard during their time here.

Also, grew up in the local lake and he said there is a bug similar to lyme that lives in lakes like that. I have also kayaked in a river in Tennessee where at the end of the river I saw a sign that said the river was contaminated and not to eat the fish. Great! :(

Okay so here is what he recommends:

*Fat biopsy for chlorinating pesticides

*Visual constrast sensitivity testing - checks behind the eyes for thickened blood

*Lyme panel - igenex

*Red Blood Trace mineral panel - to check for mineral status since chelation and mineral iv's will be done later

*Provoked Urine Challenge using dmsa - second method to help determine what other metals are going on.

*Vit D level check

**They have some type of machine in the office that I think he called UB light blood....something, can't remember. He said it helps detox and has helped people with lyme.

Also has a hyperbaric chamber??? That has an effect on lyme and other pathogens.

All of this testing is going to cost around $1930 not including the office visit today $550.00 which included lipid panel, thyroid check and other bloodwork.

My husband would FREAK if I told him I was going to spend this amount of money!!!

Any advice is greatly appreciated!

I think it would be important to know all the factors before doing the chelation treatment to ensure the best outcome. And doing ALL the testing would be the best way to determine that.

The sort of funny, maybe not so good thing, is he didn't know much about candida. He kept calling it canada. :D

Maybe thats because really there is still a root cause to all of this and its not CANADA!!! :lol:

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Oh, he does use abx and herbs in lyme treatment.

He does iv chelation in the office.

AND he was concerned about what my children have been exposed to as well.

He said a lot of those chemicals are endocrine blockers and my little 7 year old's early puberty problem could very well be caused by this. I told him how her estrogen levels were normal and he said that could be a false reading because the chemicals block or mimic estrogen. Gosh my brain doesn't work!!!

He tested me with math and I was a total dufus!

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April, this sounds thorough and makes sense, weird about him not knowing about candida though.

Perhaps the doctor could prioritize the testing and you could do a bit at a time?

No insurance coverage of any of it?

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Thought I would fill everyone in on my dr. visit today.

That was a very thorough appointment by the sounds of it!

Environmental issues makes a lot of sense. Especially with what you and your child (firstborn) dealt with during your pregnancy and all the cleanup etc.

DDT! It sounds highly plausible that your grandparents could have had some help with pushing cancer along with toxins around the house/yard. :(

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April,

That sounds really expensive for some reason to me. I don't think we spent that much money on testing, but we also have had a lot of bloodwork recently from other Dr's, so maybe they just used that instead of taking more of my blood.

It sounds like a great appt. though! :D:) I'm glad. That is weird about the candida thing...is he an LLMD? Can't remember. ;)

Paula and Andrea,

Yea, I was surprised at how nice she is. I guess online school is less stressful.

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I don't have any ideas on the testing though.

My husband and I don't like debt, although we've maxed out our credit cards.

Wouldn't your hubby understand that things will only get worse as time goes by and something needs to be started under a doctor's care to be on the safe side?

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is he an LLMD

No, but he does treat lyme. I don't know if you classify that as an llmd or not?

DDT! It sounds highly plausible that your grandparents could have had some help with pushing cancer along with toxins around the house/yard

That and being heavy smokers! :o But yeah, bad stuff in this house!

April, this sounds thorough and makes sense, weird about him not knowing about candida though

I am sure he *knows* about it because he didn't question me on it or act like he didn't understand it. But its not on the list of things he treats and he kept calling it CANADA! :lol:

But his specialty is in environmental toxicity so maybe he just goes straight to the testing and cleanup and skips the yeast. He understood why I was leary about taking abx though.

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I don't have any ideas on the testing though.

My husband and I don't like debt, although we've maxed out our credit cards.

Wouldn't your hubby understand that things will only get worse as time goes by and something needs to be started under a doctor's care to be on the safe side?

He has trouble understanding why something would affect me and not him. He understands that our kids have some issues that cannot be explained necessarily.

He might be more into it seeing that he's an MD and not an ND. I'll have to talk to him without MONEY coming into the conversation cause that will steer it straight into an argument. We are having some money issues right now, so that doesn't help. But I am like you, I will charge it in hopes to feel better and get our kids straightened out.

QUESTION:

IV chelation....Your body still has to process the toxins right? Why would it work better than the other chelation methods I have tried?

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Dear Rachel

I tried also to send you a pm,your box was full.can you please tell me which brand biotin do you use?

I do recommend to check your PTH.

thanks for all the wonderful informations elisabet

Elisabet...I responded to your thread titled "To Rachel". I dont have the bottle with me...I cant post the brand until I'm home...which will be Sunday.

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QUESTION:

IV chelation....Your body still has to process the toxins right? Why would it work better than the other chelation methods I have tried?

Rachel would probably know more about this.

I'm thinking your pathways would still need to be open. If you excrete metals during the challenge I would think you'd be ok. Just need to have the minerals checked before you do chelation so you don't have complications with losing too many minerals.

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Wow what an appt April!

I am sure he *knows* about it because he didn't question me on it or act like he didn't understand it. But its not on the list of things he treats and he kept calling it CANADA! :lol:

I have actually heard it pronounced this way by different Drs/practitioners, cand-di-da (rather than can-dee-da) so it comes out "Canada"

That does seem expensive for testing, yikes.

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I think it would be important to know all the factors before doing the chelation treatment to ensure the best outcome. And doing ALL the testing would be the best way to determine that.

I agree...I think its a good idea to get as much testing done as you can afford. I've tested for most things that have come up...the ones I tend to skip are the ones that I feel are secondary issues...like adrenals, neurotransmitters...stuff like that. Thats because I cant afford to do *everything*.

The sort of funny, maybe not so good thing, is he didn't know much about candida. He kept calling it canada. :D

My conventional Dr. called it Canada as well. I do still have a conventional Dr.....its usually a horrible experience when I go see her. :rolleyes:

It occurred to me though that the Dr. may have been saying it correctly...its not pronunced "can-dee-da" like most people think. I still say it this way but its actually pronounced "can-did-a". When you say it as it should be said..it sounds like Canada! :o

But yeah...a few months back I posted about my Dr. calling it Canada...I thought she was pretty lame for saying that. :P

Maybe thats because really there is still a root cause to all of this and its not CANADA!!! :lol:

Yeah...seeeee thats what I've been trying to say forever now! :P

I think this Dr. sounds pretty good...if he had spent alot of time focusing on your Canada... ( :lol: ) I'd be more concerned. ;)

He tested me with math and I was a total dufus!

MY two worst "brain issues" are short term memory loss and MATH. I suck at math now! I seriously cant do *anything* that has to do with numbers. If its something that I've memorized then its fine...but anything which requires my brain to process the info and come up with the answer...forget it!

Its like I cant get to that party of my brain...I see the numbers all jumbled in my head...its very stressful. :wacko:

I read somewhere that short term memory loss and problems with math seem to be the most common cognitive problems found in people with mercury toxicity.

So yeah...I'm a total dufus too! :P

QUESTION:

IV chelation....Your body still has to process the toxins right? Why would it work better than the other chelation methods I have tried?

Theres no guarantee that it will work better. IV DMPS is known to be the most effective...but because its so effective at pulling out metals it can also cause more problems if your body cant handle it.

I had spent some time researching all of my options and theres alot of conflicting info. I mostly look at results...what seems to work the best and what are the most experienced Dr.'s using...what do patients who have recovered have to say about treatment methods, etc.

I read alot about DMSA causing more gut issues...more immune responses and more yeast....it can also put alot of stress on the liver. It may be able to chelate from the brain. The recommendation of many Dr.'s is that DMSA is better used later on in treatment....not in the early stages of treatment when the mercury burden is very high.

IV DMPS obviously bypasses the gut....so thats one reason I chose it. I also chose it because its most effective.

I also knew I could be tested for it to find out if it would work well for me...so that took some of the fear away.

I think that IV DMPS (or any type of chelation for that matter) can cause some serious problems or setbacks if more metals are mobilized than what the body is able to excrete. Some people may only tolerate a very small dose without having symptoms of redistribution. It depends on your body's ability to excrete.

You never want the dose to exceed what your body is able to handle. I think thats probably the #1 problem with people having bad reactions to this type of treatment....redistribution from more metals getting mobilized than what the body is able to excrete. Either that or having an intolerance or allergic reaction to the chelator itself.

Everyone is different and one chelator may have a negative effect on your body whereas the next one might be very effective.

Mercury needs to come out in a certain order...and certain chelators pull from specific areas better than others. Its not likely that just one chelator will get the job done all by itself. After DMPS does all that it can do for me...I will switch to DMSA...probably with R-Lipoic Acid.

If you're not being monitored in any way...there is no telling whats going on with the metals....or how well your chelation is going.

NDF didnt go over well for me...it was the first chelator I tried and right now its on my "avoid" list per ART.

DMSA tested well for me but not as well as DMPS...and I suspected a worsening of gut problems while on DMSA.

DMPS was the treatment my body responded the best to....in my own experience and also in testing (ART).

It might be the worst choice for someone else.

I think its important to start with a very low dose...complications can occur if the dose is too high.

Since IV DMPS is the most powereful method of chelation....I think it'll also move things along much faster than had I continued on the DMSA. I seem to tolerate my dose very well and have had no side-effects thus far.

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April....I agree that the price of testing seems high...but I'm not sure all that he's testing.

For example...if the Lyme testing consists of Western Blots + co-infections that would raise the price significantly. I paid around $600-$650 for co-infection testing alone!

Depending on what he orders the Lyme testing alone could be close to $1000.

My insurance covers 50% so that helped out alot. I would ask him for a breakdown of what specific tests you'll be getting plus the cost of each.

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April,

I think the chemical insults definately contributed to your problems...but I also think there are very likely infections as well. Either as a result of the toxicity in your body from all the exposures...or if something like Lyme were present all along you would be more susceptible to these toxic exposures.

The chemical insults from the house might have been the last straw...but I think usually things are biulding up long before we become symptomatic. All of my Dr.'s have said that the body deals with burdens and we feel "fine"...until the point that the burdens become too great...and then we fall apart.

Thats why I think its good to really look into all of the possibilities.

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Hi all, I've only been skimming while I'v been gone. :) I'm not going to go back and read it all ... you guys were busy, LOL.

Kassandra, New York used to be called New Amsterdam, so that was Dutch. The French, I believe, came down the Mississippi from Canada (not candida), thus, French Canadians and New Orleans. The Spanish were in Florida, Mexico, and South America. They also had a lot of Catholic missionaries in California, which is why so many cities out there have saint names in Spanish. New England .... English.

Don't know if that helps, or if it's too late, but that's what I remember. :)

Okay, LLMD appt. GREAT NEWS across the board!!!! I can even say it all here ....

Chloe was taken off all meds!!!! She's had two months of no symptoms, so he considers her done, but wants to do Cowden to ease her off meds. She's starting full Cowden tomorrow for about two months, then we'll go to limited.

I am taken off most meds! What a shocker that was! Really, my only remaining symptoms are insomnia and tired in the morning, except when I take Tindamax, then I feel sick again.

He thinks my body is asking for more detox and less meds. :)

He says getting the cysts is important, but we'll use grapefruit seed extract to do it less vigorously. I'm staying on minocycline, plaquenil, and Lariam.

I'm also on Full Cowden.

He wants to work on my thyroid and adrenals, so I'm Synthroid now instead of Armour because I had no change after a month on Armour. I also am on some adrenal supplements in addition to what comes with Cowden -- Xymogen Adrenal Essence.

He wants to get the remaining metals even though they are well-within range and "the lowest he's seen." So, I'm taking Zeolite by Nutramedix for that, along with NAC and ALA.

He said the ILADS protocol would have me on the full abx until two full months symptom free, but he's tried Cowden on 400 people now and thinks it's the better way to go to finish up. He said it's like using an atomic bomb ... works well in the beginning in heavy infection, but the herbs are better for the straglers.

He said to take a sauna every day ... I've been taking them 4 or 5 days per week, but not at all when I take Tindamax as they would make me feel worse. He said later we may use Tindamax again and use it right after the sauna because the sauna's heat causes the Lyme to go to the cyst form.

He said I should feel good except for the two or three days per month I flare. He said to use a glutathione cream (forgot to get the prescription for this, will have to call tomorrow) to help with the symptoms. Also coffee enemas are good to use during this, too ... he said he doesn't actually recommend coffee enemas to people ... he can't really, LOL, he can recommend saunas and other stuff, but enemas? :lol: But he's used them and his wife has ... I told him I was doing them ... he never recommended them to me, LOL.

I told him about the Humaworm. He's never heard of it and is looking it up on the internet. He was pleased that I felt so much better after it. He liked the idea that it was herbal.

So, all in all, I'm thrilled.

I did not get to see Beverly even though she was in NY today .... her appt. was longer than expected and I wanted to catch an earlier flight.

Oh, oh, oh, AND, I don't have to go to NY anymore unless I have to start back on all the meds .... we can do it over the phone now. :) Chloe won't need monthly phone consults ... but we do have to talk in one month to see how we're doing off meds (almost off for me).

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I think I'll call the office tomorrow and get more exacts on the lyme testing. I do want to be checked for co-infections as well. I am thinking bart just because of breathing issues (i think its bart??).

I have a lot of questions. Of course, I think of all of this after I LEAVE! Now I'll have to schedule another appointment to ask them.

I brought home the dmsa challenge urinalysis. I think I will go ahead with this. I really should have done that a long time ago.

The Red Blood test also checks for mineral status. So, that way if I require iv minerals then he will know what I need.

Do you know much about edta iv chelation? I don't know what he uses. Another good question. I will insist on a small dose because I do not detox well. The problem he doesn't use any muscle testing that I know of to determine what is good for a person.

He has some type of light ray thingy-mi-bob that helps assist in detox. I wish I could remember the name so I could research it. But it sounded like LED in a way.

I agree with you Rachel, I think there were many factors in what led me to where I am. I would love to get as much testing as possible to help determine the best solution.

I think I'll call my insurance company and see if I can get an answer on what they will pay for the lyme testing. I really need to get the co-infection too.

I was pronouncing it Can-did-a and he kept saying Canada. :o I feel like my doc needs to know about canDIDa!!! Oh well.....

His math test was 99 - 7 = 92, 92-7=85, and so on. Who in the HE** can do 7's! That's a hard number! I can do math but 7's sent me into total DUFUS mode. :lol:

I couldn't think of the river that I kayaked in that was contaminated, I think with Mercury. Now i know - it was the Pigeon River. UGH! BRAIN! :(:huh::lol:

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Wow Carla! That's GREAT!!! I am so happy for you and Chloe! I hope I will be where you are in a year!!!! :D

Thanks for the info about history, it's not too late...no deadlines. Nothing is ever too late. :)

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Carla, welcome back :)

Excellent update, for you and Chloe both!!!

I am beyond words, just so happy for all the progress you have made.

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His math test was 99 - 7 = 92, 92-7=85, and so on. Who in the HE** can do 7's! That's a hard number! I can do math but 7's sent me into total DUFUS mode. :lol:

You can use Nyxie's slogan:

"I can't brain today, I have the dumb"

Just a suggestion, write down all of your questions and keep adding them as you think of more. Then you won't forget them for next time.

Is there anyway you can call the front desk and let them know you have questions before you are able to make your decisions? That is what I would do, often times they will take down some of the questions and get back to you with the Drs answers.

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Carla.

That is so great about you and chloe im so happy for you both.

April,

sounds like a good appt, im happy for you. I hope you get answers soo,

I get some results back tommorow, so im sure ill be up all night tossing and turning.

paula

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Okay, LLMD appt. GREAT NEWS across the board!!!! I can even say it all here ....

Wow!!!!! :D :D :D

You can't ask for better than that. I'm so happy for you two! :D

I get some results back tommorow, so im sure ill be up all night tossing and turning.

Can't wait to hear your results either. :)

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Carla...GREAT news!! :)

I know you'd been looking forward to getting on the herbs....looks like you got your wish sooner than you'd thought! Thats really exciting news...both you and Chloe have some celebrating to do! WOO-HOO!! :D

Julie...yeah I love that slogan!! :lol:

"I have the dumb"...that part cracks me up! :lol::lol:

Too bad it applies to me way more than I'd like. :P

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