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Mercury and biofilms


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#1 llm

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Posted 03 October 2011 - 06:54 PM

So I've been down the mercury/chelation path recently. I have several things that make me feel mercury toxicity is part of our problem. DS also has KPU. I also believe after 3+ yrs and mutliple abx for Pandas & lyme, biofilms are a big problem.

After extensive reading, I want to try a slow chelation treatment every other weekend, using DMSA or DMPS. (after checking for glutathione levels and yeast and doubling up probiotics, probably adding taurine) - oh - and after my father's visit in early November!

Here's my dilemma:
1. Biofilms use mercury and lead as two of the building blocks.
2. If you chelate mercury and lead on a weekend, the chelator will bind to the metals hopefully until excretion. You will probably feel poorly during the weekend and on the day you stop, because some metals may be loosened but not bound up and will re-settle somewhere.
3. If you remove biofilm building blocks, you will erode the biofilm and release spirochetes and other nasty microbes.
4. These microbes will release toxins as they die (the herx).
5. You will feel poorly until the die off ends and the toxins are excreted
6. Chlorella is apparently not a good thing to use because it molecularly can attract mercury but can't form a pincer grasp to bind it strongly enough to ensure its excretion. It may only move the mercury, not get rid of it. Clay may be an option, or charcoal, but both come with timing issues when you have so many abx and probiotics and supplements to fit in.

The biofilm busting protocols I've come across don't use DMSA or DMPS. They rely on breaking down the biofilm in other ways. But that doesn't address how to handle the mercury/lead fallout.
The mercury chelating protocols I've come across don't address how to manage a die-off herx for the days/weeks afterward.
So I'm stuck winging it.

So here are my questions, for anyone who's followed any of this...
- Does anyone know a good resource for bentonite clay capsules (DS will never drink it)
- Does anyone know of an alternative to chlorella that doesn't need to be timed away from other things? Have come across zeolite but that seems to absorb good stuff the same way clay or charcoal do. It needs to be practical for a 9yo who is particular about what he'll put in his body. Pills = great solution. Liquids = bad solution

- Most importantly - does anyone know who might be an expert on both biofilms and mercury detox? A researcher or clinician I could ask my LLMD to consult with? At our next appt, I'm going to try to bring our LLMD along for this ride but I think it would help if I gave him a name and phone number of someone who could talk shop and walk through this to see what I'm not covering. He already follows some of Dr Ks ideas on this, but the chlorella has made me go hmm...so with due respect to the man who changed my son's life by talking about KPU, I want someone other than Dr K to look at this picture. Sapi is an expert on biofilms, but probably not chelation. Who's a big name in the autism/lyme world other than K?


#2 laure

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Posted 03 October 2011 - 08:15 PM

We used clay capsules from Donna Pessin:
http://www.uniquehealing.com/
They ship quickly and are reasonable.
Mom of Dd12, Lyme/PANDAS since 3/10

#3 tpotter

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Posted 04 October 2011 - 04:38 AM

Are you going to the conference next week? I think these would be GREAT questions to ask...particularly day 1. I'm going, and still need a room mate (the one I had is needing to cancel out.)

I just think that we need questions like these answered, because many of us are probably dealing with all of this.

#4 llm

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Posted 04 October 2011 - 04:53 AM

Oh, I have the questions! It's the answers I need :D

No, no conferences for me this year. But by all means, feel free to print out my questions and corner some poor, unsuspecting presenter for me (us)!!!

#5 suzan

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Posted 04 October 2011 - 06:35 AM

Great job LLM coming up with these great questions! I am giving Chollera with the other pills. Oh no! I need detox soltuions for both girls for different reasons but you have helped me with some info here for dd10. I think I need to switch things up a little.

Susan

Me - diagnosed with hashimoto thyroiditis in 1996, lyme and parsonage turner syndrome in 2010, mthfr mutation in 2013

dd10 and dd11 - diagnosed with sensory processing disorder in 2006, gluten intolerance in 2007, pandas in 2008, lyme in 2010, mthfr mutation in 2013

 


#6 sss

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Posted 04 October 2011 - 06:58 AM

I'm always hesitant to post about chelation, it can be a very strong opinion topic. Plus, I don't write scientifically, nor am I energenic enough to provide links. And if you ask me to back up my opinions, I won't be able to provide links, it comes for 2-3 years of obsessive reading on the topic, and experience of myself and others I've read/known.

Had our Lyme tests come back negative, I was all set to spend this next year chelating dd6 with DMPS, to get her mercury levels down.
Before we got to pandas in 1/11, we had just finished 5 weekends of chelation with DMSA only, dosed every 4 hours, 3 days on, 4 days off. Then she exploded. DMSA has the potential to lower neutrophils (which the body uses to fight infection.) Ours were low after testing after DMSA. Could have been Lyme related in hindsight, or the DMSA.
I believe the DMSA (and DMPS) are 'true' chelators, with the pincher grasp/thiol, to penetrate and grab the mercury, through bio-films, and escort it out of the body (DMSA/DMPS through urine, ALA through stool)
So, I believe we 'exploded' because we had never dealt with my dd's bacteria load- strep and/or Lyme. We were not on antibiotics, never really had been. And it got 'released'. I mean all he!! broke loose.

Both our DAN! we had been working with, and our LLMD, suggest beating down the bacteria load before true chelation.
When our DAN! signed our Igenex test, he said 'chelation is on hold, you have to deal with the Lyme first, if it is there.'
So we are working on that now, chelation is later/last/we'll see.
I will not use chlorella, cilantro, and the like. After Japan's radiation issue, don't trust the products, anyway, but I (personally) don't believe they hold on to heavy metals adequately.

I do have charcoal, I do have bentonite clay, and as we do parasite cleanse, viral prescriptions, yeast, bacteria, and all this crud, these binders may/will come in handy for some relief.
But when you are 'truly' chelating, binders are not used. The theory being if you are using DMSA/DMPS, these 'true' chelators, they are holding onto the mercury, not dropping it, not needing binders, in fact, could mess with the process.
As for Lyme treatment, and using a cyst buster, and then heavy metals coming out of that bio-film, well...just the regular binders of bentonite (we have unique healing caps) charcoal, making sure those bowels are move, move, moving.
If some mercury gets dropped, or moved, during Lyme treatment, I guess that is why you go back to actually chelate near/at the end of Lyme treatment.

My .02 cents!

Edited by S & S, 04 October 2011 - 07:09 AM.

Daughter 9, PANS, Aspergers traits, probable congenital Lyme,
biomedical treatments w/DAN! Cam K 175, 2 HD IVIG's, 2 LLMD's- improved, but still challenging in areas at times.
Mom-tested positive Igenex PCR Lyme, and positive Bartonella 2011.
Went through extensive Lyme/Bart treatment, lasting improvements.
Both off treatments > a year,
but require special diets
and a pharmaceutical script or 2.

#7 llm

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Posted 04 October 2011 - 07:25 AM

Thanks S, as always...
So just thinking out loud...
DS was on monotherapy abx for 18 months (5/09 - 9/10), then on combo abx for the past 12 months. I think we've done all we can on "free floating" spirochetes.
We did cyst busting for 4 weekends in April '11 and had to stop. He couldn't detox fast enough and I'm thinking it was more than just toxins, that it was also mercury/lead (based on urine test and his "blip" behavior the day after DMSA challenge for the urine test).

So I hesitate to do a cyst-busting plan that doesn't incorporate a true chelator. I believe the cysts as well as the films are holding mercury. As you well know, the use of clay/charcoal is difficult when you have to work around abx, probiotics and school. So a binder alone, maybe only once a day - don't feel that will be sufficient and am very worried about mercury being released without 2 thiols floating around to catch it... I think mercury needs to get to the gut before it will be bound by a binder. Too risky that it would settle into tissue, so I really want a chelator on board (does this make sense or am I being paranoid?)

That brings me to the idea of using Cutler's chelation plan, every other weekend, with clay or charcoal once (maybe twice but I can't see how) a day every day to sop up bio-toxins from the spirochete die off. Will also remain on combo abx to kill the spirochetes as they emerge from the film.

Will also supplement with mega-zinc, increase probiotics to ward off yeast (why does yeast become a problem with chelation?), maybe add taurine and magnesium (like magnesium for it's BM moving abilities and sleep benefits and its possible ability to help enuresis, but have also read that lyme likes the stuff and you shouldn't supplement - on the fence about that one)

I can understand holding off on chelation until the load is reduced (which I hope is what we've done in the past year). But I can't see waiting until lyme is "done" because in DS, I think a lot of his lyme is in the biofilm (3 yrs on abx - you know those suckers have secret bunkers). So aside from my gnawing desire to ACT, it feels like this is the next logical step. But I'm not married to it. That's why I'm asking for help. I want to see where the holes are in my thought process. For me, it feels like film busting or cyst busting has to come with a chelator due to what I think is a mercury situation.

But yes, it does feel like I'm trying to combine what is usually a two step process into one. On the other hand, I'm not grasping a way to safely do one without the other if I'm right about our dual problem of mercury+lyme. One isn't going to be dormant while we deal with the other. Am I being too aggressive? I want to cure the kid, not kill him :)

(bear in mind - our biggest issue is brain fog/cognition. Tics, OCD, rage - only came back when we did cyst busting. Muscle pain is gone. Brain fog is a daily thing. Which makes me really nervous about moving mercury without excreting it - I fear there's plenty in the brain - the stakes are high)

Edited by LLM, 04 October 2011 - 07:27 AM.


#8 sss

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Posted 04 October 2011 - 08:12 AM

Thanks S, as always...
So just thinking out loud...
DS was on monotherapy abx for 18 months (5/09 - 9/10), then on combo abx for the past 12 months. I think we've done all we can on "free floating" spirochetes.
We did cyst busting for 4 weekends in April '11 and had to stop. He couldn't detox fast enough and I'm thinking it was more than just toxins, that it was also mercury/lead (based on urine test and his "blip" behavior the day after DMSA challenge for the urine test).

So I hesitate to do a cyst-busting plan that doesn't incorporate a true chelator. I believe the cysts as well as the films are holding mercury. As you well know, the use of clay/charcoal is difficult when you have to work around abx, probiotics and school. So a binder alone, maybe only once a day - don't feel that will be sufficient and am very worried about mercury being released without 2 thiols floating around to catch it... I think mercury needs to get to the gut before it will be bound by a binder. Too risky that it would settle into tissue, so I really want a chelator on board (does this make sense or am I being paranoid?)

That brings me to the idea of using Cutler's chelation plan, every other weekend, with clay or charcoal once (maybe twice but I can't see how) a day every day to sop up bio-toxins from the spirochete die off. Will also remain on combo abx to kill the spirochetes as they emerge from the film.

Will also supplement with mega-zinc, increase probiotics to ward off yeast (why does yeast become a problem with chelation?), maybe add taurine and magnesium (like magnesium for it's BM moving abilities and sleep benefits and its possible ability to help enuresis, but have also read that lyme likes the stuff and you shouldn't supplement - on the fence about that one)

I can understand holding off on chelation until the load is reduced (which I hope is what we've done in the past year). But I can't see waiting until lyme is "done" because in DS, I think a lot of his lyme is in the biofilm (3 yrs on abx - you know those suckers have secret bunkers). So aside from my gnawing desire to ACT, it feels like this is the next logical step. But I'm not married to it. That's why I'm asking for help. I want to see where the holes are in my thought process. For me, it feels like film busting or cyst busting has to come with a chelator due to what I think is a mercury situation.

But yes, it does feel like I'm trying to combine what is usually a two step process into one. On the other hand, I'm not grasping a way to safely do one without the other if I'm right about our dual problem of mercury+lyme. One isn't going to be dormant while we deal with the other. Am I being too aggressive? I want to cure the kid, not kill him :)

(bear in mind - our biggest issue is brain fog/cognition. Tics, OCD, rage - only came back when we did cyst busting. Muscle pain is gone. Brain fog is a daily thing. Which makes me really nervous about moving mercury without excreting it - I fear there's plenty in the brain - the stakes are high)



**I hear exactly what you are saying, it does make perfect sense to me.
I think you are being led to this, because it is something you should be doing. You have worked very hard for quite awhile now getting the bacteria load down- and the KPU, which I have no experience in, but the releasing metals bit---is very concerning, I would think (would be for me, with a child who has positive testing, for mercury/heavy metal toxicity.)
And it is scary to leave those in, the older they get.
I am interested what your Dr. has to say- I think the every other weekend sounds like a great plan, and he will still be on antibiotics- the yeast issue and chelation, seems like it happens with kids who already have a past yeast issue (like us) and as the chelator/metals pass through the gut, it can stir yeast- just have to watch out for it.
And the every other weekend is enough, but not 'FULL on', KWIM? Gives the body sufficient time to rest/get the minerals back in.
I am anxious to get the mercury I know is in my dd, too- very. Scary as chelation is. I *know* it is a deep core issue for her. And I'm weary after spending 3 years doing every thing else for the immune system that is out there- I'm ready for core issues (the lyme and heavy metals)
Sorry for my own rambling, but I do believe you are going in the right direction!
xxoo
S

Edited by S & S, 04 October 2011 - 09:15 AM.

Daughter 9, PANS, Aspergers traits, probable congenital Lyme,
biomedical treatments w/DAN! Cam K 175, 2 HD IVIG's, 2 LLMD's- improved, but still challenging in areas at times.
Mom-tested positive Igenex PCR Lyme, and positive Bartonella 2011.
Went through extensive Lyme/Bart treatment, lasting improvements.
Both off treatments > a year,
but require special diets
and a pharmaceutical script or 2.




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