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Nicole's Mom
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Hi. Another question. First let me tell you that in spite of that rash- since Nicole has come home -all of your good thoughts and prayers are starting to pay off in tiny ways. In the past couple of days Nicole is a smidge more ambulatory - her appetite is slightly bettter- and she is sleeping better- more deeply. She still has horrible brain fog and still must lay down and still cries about things that are terrible but I think it's that she is more relaxed here and is generally less stressed. So in spite of that rash these subtle improvements have occurred. There is just something about Nicole that seems better in a few ways albeit subtle and slow.

Okay the question: The new doctor who is an MD and an ND and went out of his way to come to our house to see Nicole and took lots of notes and listened carefully and has good credentials has ordered some tests and Quest Lab will be coming by either this Thurs. or next Thurs. to draw some blood for endochrine and some simple things- (they said they were really backed up). Meanwhile the doctor's secretary just called and she is having my husband pick up some other tests in the form of kits. Saliva tests, cortisol tests, urine collection things and SOMETHING THAT LEADS TO MY QUESTION which has to do with a mercury challenge test.

Nicole has to take 10 pills over a period of time and I think collect urine. She has tested really high in the past for mercury under Dr. Paul Cheney's care and mercury is known to wreak havoc with your health and with endochrine systems - Nicole's endochrine system is a total mess. Nicole tried gentle measures in the past to clear out the mercury but had to stop the process because it made her ill. Meanwhile Nicole has heard that this mercury DSMA "challenge" test can make you really sick. I just looked on the web and did see some evidence to back this up. Anyway Nicole wants to be a good patient since this doctor is so invested in helping her and we have no one else to help her right now but she is concerned about this test and so am I if it will make her sicker. We all know how sensitive a POTS patient can be and now Nicole is just starting to show some subtle improvements and I don't (and she doesn't) want to get worse than ever from such a test. Yet if her mercury is really high and messing her up would we want her to know this? Wouldn't we want to correct it?

Has anyone else heard of this DSMA mercury challenge test or undergone it? Has anyone every found out that there mercury level was really high and had it cleaned out of your system? I have heard from my nephew who is an ND that the cleaning out process can make one really sick. Anyway this is a challenge and not the clean out but still any help would be appreciated. Any help at all.

Thank you.

Beverly

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Bev

My thoughts on this are - 1) If Nicole doesn't want the test right now then it would be in her best interest to ask the doctor if maybe you can post pone it for the time being. Have her take the time to ask the doctor more questions and have her concerns addressed.

I don't really know about that test, but I've never needed to think about it before. I think there are a couple of people that will be a little more beneficial on this website to answer mercury questions.

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Beverly

I have also never heard of this test. Why not a blood, urine or hair sample test? Do you think there is good reason to suspect that Nicole would have high mercury levels? I have had a negative experience with a Naturopath, so I am biased. But, first, I agree with briarrose. If Nicole doesn't feel comfortable with the test, she should put it off. Don't let the doctor pressure you. This is one of the problems I had with the naturopath I saw. She was skillful at pressuring me to make decisions about her recommended tests and treatments, and I didn't take the time I needed to research on my own (primarily talk to my doctors) or get her to provide me with complete information so that I could make as informed a decision as possible.

Could you seek a second opinion? Perhaps talk to another doctor about this test and ask what other options might exist for getting a handle on mercury levels and then what options exist for treating it. I do believe that alternative medicine does offer help with many things, but I think it has to be approached with caution. Many treatments have not been subjected to scientific scrutiny and could be unsafe.

Here's what I found at the Agency for Toxic substances and Disease Registry (Center for Disease Control):

http://www.atsdr.cdc.gov/

"Is there a medical test to show whether I've been exposed to mercury?

Tests are available to measure mercury levels in the body. Blood or urine samples are used to test for exposure to metallic mercury and to inorganic forms of mercury. Mercury in whole blood or in scalp hair is measured to determine exposure to methylmercury. Your doctor can take samples and send them to a testing laboratory."

Where can I get more information?

ATSDR can tell you where to find occupational and environmental health clinics. Their specialists can recognize, evaluate, and treat illnesses resulting from exposure to hazardous substances. You can also contact your community or state health or environmental quality department if you have any more questions or concerns.

For more information, contact:

Agency for Toxic Substances and Disease Registry

Division of Toxicology

1600 Clifton Road NE, Mailstop F-32

Atlanta, GA 30333

Phone: 1-888-42-ATSDR (1-888-422-8737)

FAX: (770)-488-4178

Email: ATSDRIC@cdc.gov

Hope this helps.

Take your time with this and make sure all your questions are answered adequately. This is the kind of thing that some "alternative" practitioners will make unsubtantiated claims about--both testing and treatment.

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Check out the following site under "dubious tests"--there are several for mercury listed. The site is a little bit visually hard to navigate, but there is lots of useful info there: http://www.quackwatch.org/01QuackeryRelate...ests/tests.html

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I'm not familiar with the mercury challenge your speaking of, but I agree with the other post regarding simple ways to test either via hair or blood. I believe you said you already know she's tested high for mercury levels, so is this challenge something that will help her cleanse it out? There are many heavy metal detox products on the market. Renew Life makes a good one. However, as with any type of detox process, sometimes a person experiences an initial period of feeling "yucky" during the cleansing process. However, this isn't always the case. If mercury is definitely at high levels, at some point, either now or when Nicole is feeling up to it, I would definitely consider a cleansing process. Apple pectin, glutathione and selenium are very effective and they are ingredients that you often find in heavy metal cleansing products at a health food store.

Mercury can bind to immune cells and interfere with normal immune responses. It can be a factor in autoimmune disorders, kidney, cardiac and respiratory problems. I did not review the link to quackwatch that was posted, however, I have gone to their site before and they've completely mis-stated facts and debunked holistic tests and natural methods that are actually valid and scientific. Granted there's a lot of hocus pocus products and wacko naturopaths (and MDs) out there, but mercury testing and cleansing are valid if done correctly. I am glad to hear Nicole is feeling slightly better. Keep us posted. :)

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Here is another site from the EPA: http://www.epa.gov/opptintr/pbt/mercury.htm

I have also attached some information: How can people be exposed to mercury?

People are most likely to be exposed to metallic mercury from mercury released from dental fillings; however the amount of mercury released from dental fillings is generally not considered to be high enough to cause adverse health effects. Exposure may also result from industrial processes or from breathing in air contaminated with vapors from metallic mercury spills. Mercury in the form of methylmercury is of greatest concern, and the common route of exposure is ingestion. Methylmercury is of particular concern because it can build up in certain fish to much higher levels and these fish may then be eaten by people. Federal Food and Drug Administration (FDA) regulations prohibit the sale of commercial fish that are found to have high concentrations of methylmercury. Also, state and federal authorities issue public health advisories to warn people about eating fish caught from local waters that are contaminated with mercury.

TOP

Who is at risk from mercury exposure?

Except in occupational settings where elemental mercury is used, most of the health risk from mercury exposure is due to methylmercury exposure from fish consumption. Many factors determine risk from exposure including the dose, the duration, and the type of contact. The developing fetus and young children are a higher risk population because methylmercury in the mother?s body may enter the unborn child and breast-feeding infants. Young children are at risk because their nervous systems are still developing and because of their lower body weight compared to adults. Exposure and health risks may be determined by measuring the amounts of mercury in blood, urine, breast milk and hair. Over time, the body can rid itself of some contamination. Adults who consume an unusually large amount of contaminated fish on a regular basis may also be at risk.

The only word of advice I have is RESEARCH RESEARCH before your poor daughter has to go through this test. She may not need it. Good luck.

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Sorry, I forgot to add a couple more things. This test IS NOT APPROVED BY THE FDA. You can check their site. Also, I do know that when the body processes mercury, it processes it through the kidneys. If your daughters kidneys are okay, then I doubt there is an issue. You can find evidence of this in the Journal of American Medicine. Again, good luck!

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Beverly: As you know, I, like my other fellow POTsies, are really concerned about Nicole. With that in mind, I put forth the following questions for consideration:

Has Nicole been evaluated by a top-notch endocrinologist? If not, I strongly suggest that you go through an endocrinologist to have him run a battery of tests==24-hour urine collections to rule out pheocryosatome (spelling); lead poisoning, mercury poisoning, other poisonings.

Has Nicole been evaluated by a lyme disease specialist? Has she tried IV antibiotics like Rocephin to treat suspected lyme disease?

Has she tried at home IV fluid therapy?

Has she tried resting in a lounge chair with her feet up?

I am a strong believer in that you must be proactive when you are dealing with a difficult situation as is the case with POTS. I have been suffering for over a decade now with POTS. At that time, my internist ran a number of tests on her own, referred me to an endocrinologist to rule out problems in that area, a few different cardiologists (one I went to even got angry because when I was in the Cardiac Care Unit of the hospital my heart rate soared when I stood up for a couple minutes--that's not supposed to happen he said.), a neurologist who was not very helpful. My internist combed the literature and eventually located Dr. Low's 1985 article on POTS and from there located a doctor at Georgetown University who was familiar with POTS and got me in a clinical trial of midodrine. (Sorry to say, he is no longer in patient care. He was a really super intelligent and down-to-earth doctor.) In June 2003, I had a terrible flare up and was hospitalized for 2 weeks in an effort to stabilize me so I could once again stand and walk.) A few months later I went to Mayo for a second evaluation and assessment. In December 2003 I went to WVU and was put on Octreotide. Had wonderful success until September 2004. Now, after my doctor contacted Dr. Low, I am on mestinon. So far, pretty good. Next week it's off to the Mayo Clinic.

At one point, about 5 years ago when I was hospitalized, I was assessed by a psychiatrist who specialied in treating patient with chronic illness. His findings were that I was coping just fine and did not think I had a mental condition that needed treatment.

Thus you can see we are pretty proactive in seeking care. My husband couldn't be more supportive and caring! Next week we celebrate our 34th wedding anniversary. What a special hubby he indeed is for standing by my side through the 10 years of POTS!

Do you live near a major city with a teaching hospital? Maybe that would be easier to go to?

I don't think you ever indicated Nicole's problem when she stands up--I assume it is tachycardia. Is that so?

As you know, I like my other POTsies, are terribly concerned about Nicole. Nicole remains in my thoughts and prayers.

Lois

PS I hope you don't think I am too pushy but I am really concerned about Nicole. I strongly urge that she take a really proactive position in finding help.

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Wow! What great responses and info you all have sent me and all of the information. This new doctor is doing all sorts of tests some traditional medicine and some alternative as he is an MD and an ND. We have come to the conclusion that although he is a creative thinker and invested in trying his ways to get to the root of some of Nicole's problems that he might not understand how sensitive she is to things she puts into her body as many of you are sensitive. Plus not only that even a healthy, sturdy individual might have reactions to the mercury challenge. The test that revealed mercury in the past was a stool sample. Nicole explained to me why one would use an agent that binds to mercury like DMSA is better than a stool test- but I cannot remember how she explained it. She feels like she is in a catch-22 because the treatment for mercury can make one very sick yet mercury can make one sick as a couple of you have said in your posts. This mercury challenge test which pulls some mercury from the body and is urinated out (collected) can wreak havoc in several ways. Dr. Cheney (Nicole saw him a few years back) thinks that if indeed Nicole has mercury it came to her in-utero since I have many fillings the size of the Great Lakes in my mouth and Nicole hasn't the fillings in her own mouth to substantiate the amount he found in her stools. And tuna and fish were not big in her life growing up. This new doctor still wants to retest for mercury as does the traditional doctor we saw on Sept 15th but at this moment I am not sure which test Sept. 15th doc wants to do. Apparently each of these docs thinks that mercury in the body is a really big deal. I have read lots of literature re: how it can screw up one's hormones which can lead one to believe that it is an important issue to address.

Having said all of the above, late yesterday Nicole left word (answering machine) with this new doctor that she felt uncomfortable with this method of testing and suggested gentler ways. Still even a positive result from a gentler way of looking for mercury leads back to the catch-22 of removing it from the system of one who so sick. I read some scary stuff about this. And my nephew who is an ND confirmed that removing heavy metals from one's body is very risky. It seems like Nicole would have to be at a very sturdy place to do this. And if she also has a chronic spirochtal illness which is a possibility but yet to be confirmed that could become exascerbated by such a procedure and cause a total relapse again with her dysautonomia symptoms. Even oral antibiotics and then IV antibiotics which Nicole used in 1996 for this possible spirochetal infection set her way back from the herxing. That's a whole other issue which has yet to be addressed again.

I have gone on and on here- it's just that nothing is cut and dry and sometimes things are ambiguous and it is good to be pro-active and take some risks but some risks are ambiguous- like major double edged swords. I guess the way to approach it is to take it one step at a time and weigh each decision carefully when one presently is as sick as Nicole and ask you guys for your wonderful opinions.

On a positive note (being cautiously optimistic) yesterday Nicole was up and around more in the afternoon and evening than she was the day before. And the interesting thing is that she was up getting snacks and things to eat- not wanting us to fetch the stuff. She is definately eating more- not tons - but more -and the nausea hasn't been there for about a week now. Plus yesterday for the first time she closed her room off for a good period of time and wanted some "space" which is a good sign because she had been feeling so vulnerable and afraid she wanted me in her sight and her in my sight. When Nicole feels better her need for "space" increases. Of course that was just yesterday so far- one time- but still- it could be a sign. And I think I mentioned that she is sleeping more deeply for more hours and I think she is peeing less.

She is sleeping now still and her doctor just a second ago left a message on our answering machine as to when he can be reached to discuss the mercury issue.

Thank you all again for putting so much thought and effort into the question I posed. It is so difficult to make certain decisions and to understand what's what sometimes and when this mercury thing came up and the day before the rash came up I came right to this computer and began typing to you. I cannot put into words the feeling of comfort I have that you are all there and so available and the way you help and think things through. This has been such a rough time and without all of you I don't know where we would have been.

Now it's really windy and rainy so I better send this post in before my computer blinks off and on and then I'll lose all I've typed.

I'll let you know what ensues today with Nicole's conversation with this new doc.

Thanks again with all my heart,

Beverly

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A hair analysis can be used for mercury. My thought is that rather than face the potential increase of Nicole's illness with that test, why not proceed with the detox per Gena's info above? Or maybe start with chlorella or activated charcoal to begin a gentle detox. Chelation therapy is also supposed to be excellent for heavy metals, if I remember correctly. Even if mercury is not an issue, the detox could help with other toxicities (yes, we all have them!).

Great news on her desire to fend for herself a bit and that she has some appetite. That's a huge step in the right direction, and I certainly hope it continues!

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Beverly

What was the test that initially determined that Nicole's mercury levels were high? Perhaps the next step is to have a test that definitely has scientific validity and would not be complicated or hard on her--like a hair, blood or urine test. I would really question an assertion that she could have dangerously high mercury levels, unless she has had some unusual exposures--industrial, for example. No matter how many fillings you have, they are nowhere near enough to poison you, or her in utero. All of us have some mercury in our bodies--mainly if we eat fish, fish oils, get exposed to broken thermometers or fluorescent bulbs (see some of the links folks provided for the primary sources). While not good to have these exposures and we should always try to minimize them, these quantities are not very likely to make someone ill with POTS. The methods for removal of heavy metals are used when someone has clearly had a toxic-level exposure as they are hard on the body. Also, such methods cannot remove all of it, only enough to bring the level down.

I know you are trying desperately to help you daughter get well. Unfortunately when we are at this point, we are open to trying many different things and accepting alternative explanations. There is also a whole industry out there that thrives on this desperation. It gives true "alternative medicines" a bad name. I have been there too. Please be careful. Particularly b/c people with POTS do tend to be even more sensitive to medications and herbal preparations, etc.

I agree with goldicedance. See if another specialist in endocrinology and/or dysautonomia can evaluate her and work with her on treatment. It does sound like she has multiple issues going on--and as we well know, POTS is exaccerbated by underlying conditions of all kinds.

It's good to hear that she is showing some improvement these days.

Katherine

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Beverly,

I just wanted to say that I am glad that Nicole has shown some improvement these days. And I am glad that you found a new doctor that is running a whole bunch of tests. I hope that these tests will lead to some answers and even more improvement for Nicole.

I think that some people on this board prefer a more medical approach to dealing with their POTS while others prefer a more natural approach. While I take the medical approach, I think this is a very personal decision that you and Nicole can only make for yourselves. And I understand you are limited by geography and Nicole's inability to travel in her current state.

In terms of the mercury test, I agree with Katherine that it is probably unlikely that Nicole has high mercury levels from fillings and food alone. I have read a bit on this topic and re-read again some of the posts from yesterday, because I have several silver fillings (as does my mom (which she had when she was pregnant with me)). Since you are having a bunch of other tests anyway, it may make sense to wait and see if anything turns up from the other tests before proceeding any further on the mercury. If something turns up on the other tests, you may not need to deal with the mercury issue at all.

Best wishes,

Rita

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Hi Rita,

Thank you very much for your imput and suggestions.

Hopefully this new doc will use the best and wisest approach for her. He has an integrated approach of traditional and natural. Also we still have a whole raft of other tests- about 100 different things to be looked at from the other doctor she saw on Sept. 15th. There could be some overlap in testing between this new doc and the Sept. 15th doc but that's okay. Also I don't know if Nicole will end up back in the autonomic lab of her POTS doc when she is sturdier to undergo some of his testing. He is the one we had the phone consult with who didn't think Nicole should take a beta blocker at this time and didn't want to put her on any POTS meds while she was this weak. There are two other docs to contact yet who might be able to lend some help to the picture. This weekend my husband and I are working up some talking points about Nicole's illness to present to them and then to get a feel for their knowledge. One is a nephrologist and the other would be someone who could lend some imput on Nicole's possible chronic spirochetal infection which could be either Lyme or leptospirosis or even both. The second guy won an award for a paper he wrote about a veternarian who was exposed to leptospirosis and then came down with an addison's-like disease. (or addisons disease specifically). We'd like to read his paper and pick his brain a bit.

Beverly

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Opus and Katherine,

Thanks for your concern and help as well. Nicole will not do anything that will harm herself. Nor will we let her. She did speak to the doc today and he understands her concerns. So it may come down to the fact that the test might not be done at all in that she might take a smidge of one pill ( during the phone call he reduced the amount to 5 pills from 10- saying that this was a low test dose and said that the amount usually taken is 30 pills). If Nicole takes the smidge and feels anything from it - she will abandon the whole thing altogether. The last thing she wants is her brain in particular to take any more of a hit than it has already taken.

Meanwhile I just remembered that recently in our state some hoodlum kids broke into the gas company warehouse and stole some mercury- a big drum of it. Eventually the mercury (drum broken open) ended up dumped in the driveway of an apartment house and the state tested all the people there for mercury poisoning. I am going to call the state and see how they tested the people.

Thanks,

Bev

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