Madisongrrl's update - Heavy Metals
 

I had a follow up appointment with my Lyme clinicians today. We talked about my symptoms, changed around my antibiotics, and talked about some new lab results.

I had a cortisol panel done and it was one of the worst ones they had ever seen. So I'm actually going to be getting some prescription medication for this in the short term and some supplementation for the longer term to see if this can be corrected. This is one of the reasons why I'm always so tired.

I also had a toxic metal screen. They did a pre and post provocative challenge, which means that they tested my urine first. Then I was given EDTA and my urine was collected for the next several hours. The results were interesting to say the least. I was above the normal ranges for aluminum, gadolinium, lead, nickel, cesium and uranium. The cesium was the most perplexing and concerning. There is not a good reason for it, nor do I know the source.

There are many ways to get rid of heavy metals, but I've elected for chelation. I had my first IV today. They are taking some baseline mineral labs because chelation can also pull those out of your body as well. I will be adding in a mineral supplement to protect against this loss.

This may be useful:

https://www.google.ca/url?sa=t&rct=j...vKLctw&cad=rja

Madisongrrl, that is a very weird combination of metal ions present at abnormally high levels.

I spent some time wracking my brains looking for something in common (not that there need be of course) with no joy.

I hope that the chelation treatment works well.

Dear Madisongrrl,

I so understand your desire for treatment, but this is a public forum and I just wish to share information about the dubious nature and possible fatal (and other deleterious) consequences of chelation therapy for anything other than known instances of toxic exposure (such as verified lead poisoning in children).

I first learned about this in reference to autism (If you look this up in the Autism thread here onNeurotalk, you can find many warnings about it) -- but much is also written warning about its use for for cardiac ailments, etc. I've not heard of it as a treatment for PN.

True metal toxicity can apparently only be determined through hair samples: citations note metal readings from urine are highly suspect, and never should be done after the administration of a chelating agent. We all have metals in our bodies, and these will be excreted out (as you note -- including necessary metals) in what appear to be high numbers after such an infusion.

It seems a very broad jump from Lyme to this was made in your case....I'm wondering who is doing this treatment, and whether you had considered a second opinion.

Sorry these citations are not copying well... but actually, if you just look up "Chelation," in Wikipedia, there is a good summary as well as many sources.

I wish you the best.



United States Food and Drug Administration (2010). FDA issues warnings to marketers of unapproved ‘chelation’ products. Retrieved
October 26, 2010 at
http://www.fda.gov/NewsEvents/Newsro.../ucm229320.htm

https://www.nhlbi.nih.gov/.../q..

articles.latimes.com/2005/mar/07/health/he-themd7
http://www.healing-arts.org/children/holmes.htm

PS

Never mind what I wrote about hair analysis for detection of heavy metals...apparently testing can include tissue analysis, but also CBC, and renal and liver function tests. Urinalysis is also used.....but apparently testing for each heavy metal has its own protocol. The articles I read stress the presence of heavy metals does not necessarily indicate health effects.

S

I have bumped up the original post to emphasize the first sentence (bolded by me). The OP has consulted with healthcare professionals, and the choice of treatment is between a patient and their doctors. Info on pros and cons of treatments are freely discussed here, but we do ask that members respect the healthcare choices others make. Thanks

Cesium:
 

I found this today about where cesium is coming from in the testing of US patients:

http://agreenroad.blogspot.com/2014/...ed-levels.html

I find this link alarming, myself.:(

The medical professionals who are treating my Lyme, have clinical experience with this approach and recommend it because they see it help their patient popluation. So I'm going to work with them on this and trust their clinical judgment. And if it's too much for my body, then I'll take a different approach. My turn to be the guinea pig. :) They are doing a full CBC panel and mineral testing at baseline and I will retest everything again at the end.

In terms of heavy metals and Lyme, a good resource for that is Chapter 8 in the Dr. Horowitz book, "Why Can't I Get Better? Solving the Mystery of Chronic Lyme and Disease".

I was a chemist for over 13 years and was directly exposed to many of the things on my testing panel; I've had way more exposure to a wide variety of chemicals and radiation compared to an average person. We were going to run another panel that tested for more obscure chemicals that I had directly worked with, but there is no point in wasting my money on that since I opted for chelation. I've had both acute and chronic exposures during my time in the lab....

I don't think chelation is right for the majority of people and there are many safe natural ways to detox. I put a fair amount of thought into deciding to do this. I've had another medical opinion on this topic beforehand. They had the same concerns with my prior profession and were going to take the same approach.

The reference ranges on that test I took were based the knowledge that people will have metals in their system. It's an unfortunate fact of modern life - especially if you are a woman. My results mean that I was above the average person's exposure level. What is interesting is that I was taking ALA, NAC, green algae tabs plus eating well for a long time, so my attempts at naturally removing these substances has not moved the needle much.

One note of interest, I had a MRI with contrast early in 2014. It's almost 2 years later and it is still in my system. I had not expected this to be the case.

If get a chance, I'll try to post a few pub med articles later.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4144270/

Dear Madisongrrl,

I'm sorry I came on so strong in my post. You clearly have a unique history and have carefully thought out your treatment.

My situation is that I'm just suffering terribly with dysautonomia and sensory neuropathy that may be iatrogenic in origin (although I'm still seeking other underlying causes). My experience has led me to be very unsure about both conventional and alternative medicine, and I am constantly reading about each in the hope I can identify something to at least slow the progression of my symptoms. This, of course, is why I'm such a frequent visitor to NT.

I'm glad you shared more about your situation here, and I'm eager to hear how it goes for you. Thank you for being patient with my comments and offering the details of your decision-making.

I sincerely hope this brings you much closer to wellness.


Sylvie

Cortisol Panel
 

I too had a panel (although it may not be the same type) and I was wondering how mine compared to yours. I was put on a supplement, not a prescription medication, that had quite a bad effect on me and I had to stop. Basically my brain was switched on and I couldn't sleep and I was so morose I didn't want to be around anyone or go anywhere. Although I am quite sure you will be well versed in any side effects I felt it would be remiss to not mention this. I had blamed my reactions on other things and it took me awhile to figure it out.

I don't mean to turn this into a discussion about cortisol panel, but I don't know anything about it. I don't think I've had one and am thinking perhaps I should get one. Why would one get one? I have experienced plenty of fatigue, but that has almost entirely disappeared with vitamin D intake. Then again, not entirely.

David, Cortisol levels can be measured via blood, urinary or saliva tests. Here is something basic on both Cortisol blood tests and urine test. I could not find anything on PubMed for saliva testing. https://www.nlm.nih.gov/medlineplus/...cle/003703.htm

Heavy metals seem to be a problem for Lyme patients. I was also tested and my lead levels were extremely high. I grew up in Flint Michigan. I don't know if the water had anything to do with my lead levels. I also tested the old dishes I had inherited from my mother in law and they contained lead. I was using these dishes on a daily basis and using them to microwave food. Lyme disease changes so much about the body and I think we have trouble detoxing heavy metals.

I was unable to do the EDTA chelation because I am allergic to ethylenediamine, which is what is in EDTA. My integrative doctor has me on Pectasol-C, modified citrus pectin. It will take quite a while to chelate the lead this way, but it is supposed to be gentler on the body than other methods.

Lead can cause neuropathy so it is good to get rid of it.

I've talked about this a lot on NT, the fluoride that is added to MOST U.S. city waters contains lead, much of it is a waste by-product from the lead, aluminum and fertilizer industries. This fluoride is NOT naturally occurring but from waste which "they" are converting into what is going in much of our waters. Don't drink or cook with tap waters. I do my best not to, our city fluoridated in 2009, actually "late" in this 6 decade practice.

Madisongrrl, I was pondering your elevated Cs+ level - do you use caesium salts often in your work?

This is just a thought but it would surprise me if a chelator (EDTA or equivalent) would help much in getting rid of a monovalent cation like Cs+.

I've had 2 panels - one mid 2014 that I ordered myself when I was in the acute phase of my sickness. That one was okay and I did have a doctor who is familiar with it. Then I just tested again in December. It was just saliva panel. I don't know how accurate it is. I guess I would consider a "rough and dirty" test. Apparently I flunked.

I've never worked with cesium in the lab at all and I've haven't worked in the lab since winter of 2013. I'm pretty much a computer worker now.

I'm not sure if EDTA will work, but I will have a full testing at the end of this process....so we will see what happens.

I got more lab results back today. My CBC was perfect. Yes! At least I passed something. My copper was fine, but my zinc is low so I will be supplementing.

My vitamin D was also low which is insane to me. I had a low vitamin D back at the beginning of 2014 - it was 28. And I have been supplementing between 2000 and 4000IU each day since then. My current vitamin D test was 35. I think they would like to see it around 60 so I'll be supplementing even more now.

One more thing
 

My favorite nurse who understands SFN was not at my appointment on Monday. But she got a message to me today to check out this website to see what type of toxic stuff may be in my zip code.

http://scorecard.goodguide.com/

This nurse is a super interesting person. She has a kid who has recovered from autism. I think in her prior job she worked in a research setting with autistic children and she does lectures on it.

Here is one that I found on you tube, if you are interested in this topic.

https://www.youtube.com/watch?v=z-JIlFPcr6E

Mine was just a saliva panel too. I'm not sure about accuracy either. Maybe we can compare results on PM anyway?

I'll try to post mine here so everyone can see. I have to see if I can get my scanner to work....

My Results
 

Here are my results for the cortisol panel that I took in December. I'm going to be taking hydrocortisone and a supplement called Adren-All. They hydrocortisone is short term and will be dropped after a few months.

How are you doing with your treatment?

I am having a hard time increasing my Vitamin D levels also. My LLMD has me taking 10,000 units a day.

My ranges were somewhat different
 

I don't have a scanner so below are my Cortisol results. Different Lab and somewhat different range.
Morning: 32 (Elevated) Range: 13-24 nM
Noon: 16 (ELevated) Range: 5-10 nM
Evening: 8 (Normal) Range: 3-8 nM
Night: 6 (ELevated) Range: 1-4 nM

Remarks: An elevated morning/night cortisol level may be associated with insomnia, and may be the result of a stress response to an emotional or mental situation, nocturnal hypoglycemia, or chronic pain/inflammation.

I also had DHEA tested:
DHEA Free (DHA & DHEA-S
Pooled Value:1 Range: 3-10 ng/ml
High Cortisol, Low DHEA

Well I just started all these new meds and supplements today. But apart from that, I'm getting better every week. I actually had one day this week for I felt sort of like a normal human for a few hours. Of course later that night, when I had needles down my spine, I was reminded that I'm not normal. My daily pain has reduced from a 7-9, down to a 5-6 since these people started helping me. I'm so grateful.

I'm still doing 4000 IU each day, but I'm going to add a 50,000 IU one time per week.

I can't get Drs/ specialist here to do a heavy metal test. They say there is no such thing . Wonder if a natural path would do this stuff?

Yes, maybe look into naturopaths, chiros, or functional medicine docs etc. If you live in a big enough city, you should be able to find someone to do this.

Ask for a test for lead, arsenic, cadmium. They may only know
the name of the test with those labels. (sadly some doctors don't know what heavy metals are!:rolleyes: )

On this Heavy Metals issue, just know that those living in fluoridated waters are getting heavy metal doses constantly as long as drinking, cooking, bathing etc. in public watsters. Unless you are fortunate to live in a city that rejects this fluoridation. I've talked about this issue and have a major post about this issue in medications/treatments section here. I've been in the "battle" for years.

This is what goes into public waters and then our bodies.

http://energyfanatics.com/2011/02/23...rinking-water/

Quoting from the most recent link:

"Structured water is healthier than tap water because its molecules are more active, making it more energetically alive, fresh, and vibrant."

I do not understand this - can somebody explain it to me?

So I've read a little more about this so I wanted to revisit this topic. Basically, there are 2 polarizing camps on this whole topic of adrenals.....which I was aware of but wasn't sure exactly what has been published in the medical literature.

You have the integrative people who say adrenal fatigue is a real thing. Then you have the traditionally trained doctors saying it's either Addison's disease or nothing. The truth and evidence are somewhere in the middle.

This interview with Bryan Walsh was so interesting. He says that urine, blood, and saliva testing are all valid....however they are all different pieces of the puzzle as to what is going on with you. He digs into the medical literature and explains some of the valid reasons as to why cortisol can be low.

Robb Wolf - Paleo Solution Podcast- Episode 342 - Dr Bryan Walsh - Adrenal Fatigue

Here is another interview and it breaks the topics down by time stamp.

Dr Bryan Walsh - The Hidden Truth About Adrenal Fatigue - The Energy Blueprint

Some of the most interesting pieces of this interview that pertain to chronic illness:

How glyphosate might be causing low cortisol in people (21:50)

-Talks about a study which showed amounts of Roundup at levels far below what EPA/WHO considers safe showed cortisol suppression. I'm looking for this study, so if anyone stumbles across it, please post it!

Why the LD50 (the lethal dose of toxins) argument is deeply flawed (23:25)

- Many arguments are made by science skeptics by citing the LD 50 (acutely) as to why all the toxins in our lives are safe. What is not being considered is the LD 50 over a substantial length of time (years), the studies suggesting a synergistic effect between multiple toxins at a lower dose can be damaging, and the latency effect that you can get exposed to something today and not exhibit symptoms until much later. This is one of the reasons why I decided to leave the lab bench behind.

How new research shows that low doses of toxins are as damaging and dangerous as high doses through the Non-monotonic dose-response (27:10)

-The dose does not make the poison. The non-monotonic dose-response suggests that low doses of a given chemical are literally just as physiologically damaging as high doses. These studies started coming out in 2012. The class of toxins that this is reported in is specifically endocrine disrupters.

How negative toxin tests doesn’t mean that you do not have toxins in your body (57:35)

-There are studies that showed people who have tested negative for a chemical in blood, stool, and urine but then tested positive for the chemical via a sweat test. This speaks to the storage and liberation of that chemical.

thank you for this......this pertains to me in a different way than to you but may be very helpful in something i have been trying to accomplish for quite a while. Especially the synergistic effect of multiple toxins but also the LD 50.

Maybe it is this rat model study Analysis of endocrine disruption effect of Roundup(R) in adrenal gland of male rats - ScienceDirect.

I read that bentonite clay can help pull heavy metals out of the body, I've never taken it myself, but I believe in this clay.

I watch this guy: healing by design -heavy metal toxicity. Well he is saying these metals play havoc with the nervous system.