Chelation and tic improvement?

[lbee]

I'd be interested in hearing from anyone who has done chelation - especially if you have chelated for Mercury. Are there success stories out there?

 

The doctor I'm considering seems to prefer IV chelation but I'm nervous about it.

 

Any stories would be appreciated.

We are dealing with PANDAS/PANS (bartonella, possible lyme) and elevated mercury.

[rowingmom]

We have never tested DD13 for metals, but she was quite electrosensitive with a significant increase of symptoms especially ticcing and shin pain/headache when exposed to EMFs in malls, library, museums, school etc. It makes sense to me that tissue metal burden would increase electrosensitivity.

 

I too was nervous about IV chelation, and apparently our LLMD was as well because she never did suggest it for DD. I saw others in her office undergoing the procedure, but none were children.

 

When a bit of motor ticcing was the last symptom to resolve after undertaking Buhner's bart/babs protocols, I decided to try a more natural chelation. We use 4 drops of organic cilantro tincture (Flower Fairy Herbs) 3x daily (8am, 3pm, 9pm). 2 hours after the first 2 doses (at 10am and 5pm), I dose DD with 1/2 tbsp. diatomaceous earth. She also takes psyllium with the second dose of DE (to keep everything moving along).

 

The original protocol I found used pascalite clay. But being concerned about the potential amount of aluminum in the pascalite and not knowing the state of DD's intestinal lining (leaky gut) I opted for DE.

 

http://www.drdavidwilliams.com/cilantro-clay-for-detoxification/

 

The decline in DD's motor ticcing was noticeable within 2 days. We have kept up the regimen and a mouth stretching tic only temporarily returned for a month after dental extractions. They have resolved again since her teeth have shifted.

 

DD's electrosensitibity has also significantly resolved, as has my own ( I am dosing myself as well). She can no longer tell when she is an area with WIFI, although we try hard to keep exposure at a minimum at home (wired computers and phones, cell phones on airplane mode most of the time, circuits off in bedrooms at night).

 

One caution. Thinking that more would be better, I initially increased cilantro dosage to 10 drops 3x daily. Yeast infection was the almost immediate result. Apparently the body will allow yeast to bloom in the gut if there is a large release of metal into the intestines. The yeast helps to sequester the metal and keeps it from being reabsorbed. More is not better here.

Edited August 16, 2015 by rowingmom

[kim]

lbee,

 

This is an archived page so I don't know how old these are.

http://www.recoveringkids.com/#!archives/c1lso

 

In the old days, parents were mostly trying to get rid of thimerosal (50% ETHYL mercury) from vaccines. You may be dealing with methyl mercury. Has anyone identified the source? Do you live near a coal fired power plant by chance? Here is a site with some ideas. http://www.co.thurston.wa.us/health/ehhm/mercury.html

 

This says methyl mercury has a 1/2 life in blood of about 44 days

http://emedicine.medscape.com/article/1175560-workup#c7.

I'm wondering if the repeat blood work stayed he same or came down?

Did the hair test reveal high/low levels?

 

Sorry for all of the questions. I know you are looking for success stories but I hope you will share as much as you feel comfortable with as it may help someone else.

 

At one time, I was fairly "up" on Andy Cutler's chelation protocol. That might be a place where you could learn some of the details to discuss with the Dr. who is going to treat your daughter. This site and the links within might be helpful. http://www.regardingcaroline.com/andycutler2.html

[mama2alex]

I was diagnosed with mercury poisoning 12 years ago. It was off the charts on a DMPS urine challenge. I went through about a year and a half of IV DMPS chelation, but I wasn't able to completely finish because I developed an allergy/reaction to it. I was mostly well by then though. My son was 3 at the time and the doctor gave him oral DMSA - our doc was unwilling to do IV on children.

 

I had to have all my "silver" amalgams removed, abstain from eating any fish, and start on a bunch of supplements prior to treatment. The amalgams were removed by a dentist I found through the IAOMT website (www.iaomt.org) . Its a good resource for the dental aspect of mercury toxicity and finding a mercury-free dentist.

 

I can't advise you on what to do except to say do your research, look into the Cutler protocol, and be 100% sure that the doctor you go with has lots of experience with this and is extremely careful. One red flag would be if they are not supplementing with good minerals before starting because the chelation will pull out the good stuff with the bad. Also, its a good idea to look into methylation because if those pathways are not working optimally, you may be wasting your time anyway. Our son only tested positive for mercury on the chelation challenges when taking all the methylation supplements.

 

I called Andy Cutler 12 years ago and attempted to read his "book" but found it way too confusing and found him as difficult to understand as his book (I was extremely brain fogged at the time). We ultimately just did what our doctor told us, but I have been hearing good things about the Cutler protocol ever since and I think he has some youtube videos out there.

 

Here's a couple of related websites I found recently:

www.cutlersuccessstories.weebly.com

www.maybeitsmercury.com

 

 

[lbee]

lbee,

 

This is an archived page so I don't know how old these are.

http://www.recoveringkids.com/#!archives/c1lso

 

In the old days, parents were mostly trying to get rid of thimerosal (50% ETHYL mercury) from vaccines. You may be dealing with methyl mercury. Has anyone identified the source? Do you live near a coal fired power plant by chance? Here is a site with some ideas. http://www.co.thurston.wa.us/health/ehhm/mercury.html

 

This says methyl mercury has a 1/2 life in blood of about 44 days

http://emedicine.medscape.com/article/1175560-workup#c7.

I'm wondering if the repeat blood work stayed he same or came down?

Did the hair test reveal high/low levels?

 

Sorry for all of the questions. I know you are looking for success stories but I hope you will share as much as you feel comfortable with as it may help someone else.

 

At one time, I was fairly "up" on Andy Cutler's chelation protocol. That might be a place where you could learn some of the details to discuss with the Dr. who is going to treat your daughter. This site and the links within might be helpful. http://www.regardingcaroline.com/andycutler2.html

Kim,

 

I'm not sure how to identify the source of the mercury but the whole thing is really strange. DD was in pretty bad shape with PANDAS - tic/behaviour wise in Feb this year. The only test we could get run at all was an ASO, and it was positive. So we started on augmentin end of Feb and she herxed for 2 weeks (she looked like she was doing interpretive dance, her tics were so bad). Then things started calming down in and around end of March. I was still pretty hysterical at this point and had a referral into another doctor who agreed to run some other tests.

So on May 20th we found out she had bartonella, possibly lyme and a high blood mercury level (these tests were done by a 'real' doctor and it was run at Sick Kids in Toronto). The lab showed a normal mercury range of 0-8. DD was 16.9. The doc who ran the test told me upon receiving the result she called poison control since it was so high. They told her it's an emergency at 18... so we were 'ok' for now.

What I'm learning now, is that blood mercury is acute exposure... so where she got that level of exposure is beyond me. And if the half life is about 44 days, then there's a pretty good chance it was MUCH higher before ... meaning she was actually toxic at one point.

So was it excreted? Is it in her tissues? I have NO idea where it is now. We then ran a hair test which showed it as also being high (yellow) and her minerals were a mess (low).

We did repeat the blood work and 6 weeks after the initial test her blood level is now 7 (within normal range).

Our appt with the integrative doc to discuss is tomorrow. I'm terrified to chelate, but terrified not to get it out at the same time

[lbee]

I was diagnosed with mercury poisoning 12 years ago. It was off the charts on a DMPS urine challenge. I went through about a year and a half of IV DMPS chelation, but I wasn't able to completely finish because I developed an allergy/reaction to it. I was mostly well by then though. My son was 3 at the time and the doctor gave him oral DMSA - our doc was unwilling to do IV on children.

 

I had to have all my "silver" amalgams removed, abstain from eating any fish, and start on a bunch of supplements prior to treatment. The amalgams were removed by a dentist I found through the IAOMT website (www.iaomt.org) . Its a good resource for the dental aspect of mercury toxicity and finding a mercury-free dentist.

 

I can't advise you on what to do except to say do your research, look into the Cutler protocol, and be 100% sure that the doctor you go with has lots of experience with this and is extremely careful. One red flag would be if they are not supplementing with good minerals before starting because the chelation will pull out the good stuff with the bad. Also, its a good idea to look into methylation because if those pathways are not working optimally, you may be wasting your time anyway. Our son only tested positive for mercury on the chelation challenges when taking all the methylation supplements.

 

I called Andy Cutler 12 years ago and attempted to read his "book" but found it way too confusing and found him as difficult to understand as his book (I was extremely brain fogged at the time). We ultimately just did what our doctor told us, but I have been hearing good things about the Cutler protocol ever since and I think he has some youtube videos out there.

 

Here's a couple of related websites I found recently:

www.cutlersuccessstories.weebly.com

www.maybeitsmercury.com

 

 

May I ask how long your 3 year old was being chelated? Was there any improvement for him?

[lbee]

We have never tested DD13 for metals, but she was quite electrosensitive with a significant increase of symptoms especially ticcing and shin pain/headache when exposed to EMFs in malls, library, museums, school etc. It makes sense to me that tissue metal burden would increase electrosensitivity.

 

I too was nervous about IV chelation, and apparently our LLMD was as well because she never did suggest it for DD. I saw others in her office undergoing the procedure, but none were children.

 

When a bit of motor ticcing was the last symptom to resolve after undertaking Buhner's bart/babs protocols, I decided to try a more natural chelation. We use 4 drops of organic cilantro tincture (Flower Fairy Herbs) 3x daily (8am, 3pm, 9pm). 2 hours after the first 2 doses (at 10am and 5pm), I dose DD with 1/2 tbsp. diatomaceous earth. She also takes psyllium with the second dose of DE (to keep everything moving along).

 

The original protocol I found used pascalite clay. But being concerned about the potential amount of aluminum in the pascalite and not knowing the state of DD's intestinal lining (leaky gut) I opted for DE.

 

http://www.drdavidwilliams.com/cilantro-clay-for-detoxification/

 

The decline in DD's motor ticcing was noticeable within 2 days. We have kept up the regimen and a mouth stretching tic only temporarily returned for a month after dental extractions. They have resolved again since her teeth have shifted.

 

DD's electrosensitibity has also significantly resolved, as has my own ( I am dosing myself as well). She can no longer tell when she is an area with WIFI, although we try hard to keep exposure at a minimum at home (wired computers and phones, cell phones on airplane mode most of the time, circuits off in bedrooms at night).

 

One caution. Thinking that more would be better, I initially increased cilantro dosage to 10 drops 3x daily. Yeast infection was the almost immediate result. Apparently the body will allow yeast to bloom in the gut if there is a large release of metal into the intestines. The yeast helps to sequester the metal and keeps it from being reabsorbed. More is not better here.

I do like the idea of a more gentle, natural, slower approach. But I just know that her blood levels were so high before that it must have settled somewhere. So I feel like it needs to come out. I will see what the doctor says tomorrow about his approach. He's an integrative doctor who's apparantly been doing this since 1999. I am just weary of something too aggressive.

[rowingmom]

Wonderful to hear that you have found some "real" help. I can't imagine that they found both bartonella and mercury at Sick Kids. Be aware that they will not treat her bartonella properly, but your integrative doctor has probably already told you this.

 

Our family doctor, who was at one point the President of the Ontario College of Physicians and Surgeons, refused to do his own bartonella testing even after I had run Igenex and it had come back positive. All of DD's symptoms were blatant bartonella as well. He insisted I give her Ritalin and clonopin, otherwise he would not work with me.

 

I left and will never go back. Several walkin clinics refused to work with me also. At least you have help near home.

 

I hope you find the source of contamination.

Edited August 17, 2015 by rowingmom

[lbee]

Wonderful to hear that you have found some "real" help. I can't imagine that they found both bartonella and mercury at Sick Kids. Be aware that they will not treat her bartonella properly, but your integrative doctor has probably already told you this.

 

Our family doctor, who was at one point the President of the Ontario College of Physicians and Surgeons, refused to do his own bartonella testing even after I had run Igenex and it had come back positive. All of DD's symptoms were blatant bartonella as well. He insisted I give her Ritalin and clonopin, otherwise he would not work with me.

 

I left and will never go back. Several walkin clinics refused to work with me also. At least you have help near home.

 

I hope you find the source of contamination.

 

Rowingmom, I don't think I wrote my post very well. What I meant by 'real' doc is that I was finally able to find a paediatrician who was willing to order the blood work for the viruses (lyme, mycoplasma, bartonella etc) and at the same time she ran mercury and other metals etc. As you mentioned, most doctors won't even run their own tests for Lyme or co-infections.

 

I took the paediatrician's requisition to the blood lab at Sick Kids to run the testing. Until this time, when I ever mentioned results from blood/hair etc I had run on my own via a ND /Integrative, those findings were ALWAYS dismissed by doctors along with my concerns. So when I finally got tests done by what they deem to be a 'real lab' by a 'real doctor' then they finally took note.... at least for the mercury. And they couldn't dismiss that something was really going on in this little body of hers.

 

You are absolutely correct in that they want nothing to do with treating the Bartonella. In fact they are calling her result negative and that a 1:64 titre just means there was exposure a long time ago and that there is no infection. When I mentioned the enlarged lymph node and blurry vision they said lots of things cause that as well But they did go on to say that EVEN "IF" she had Bartonella or Lyme, at one point, then she was cured by now since she had been on months of abx for PANDAS (strep).

 

If I thought they were treating bart properly, I wouldn't be exploring my options with an LLMD in the US and looking into chelation up here. Needless to say I met with the integrative doc today re: chelation and I didn't leave with warm fuzzies. He told me to give her Milk Thistle for 2 weeks to protect the liver and then we'll do a urine chelation challenge to see what comes out. So I have some thinking to do. And I need to decide on an LLMD or 'real' integrative doctor that knows what they're doing.

[rowingmom]

I have come to rely on intuition. I know it sounds silly, but in my heart I just know what is really right or really wrong. Don't completely dismiss these feelings.

[sf_mom]

Viruses and Bacteria attached themselves to metals.

 

I saw a great documentary on how the sunken Titanic is covered with biofilms called 'Rusticals'. When some Rusticals were pulled from the ships hull and tested they found 5 different types of bacteria's encased in a hard shell of a specific bacteria. These types of bacteria don't require oxygen but were eating the metal of the ship to survive. It is thought the ship will eventually deteriorate entirely from the metal eating bacteria.

 

I am using the above analogy so you can imagine why and how your DD might be collecting metals internally. When you pull metals you release the bugs often housed in biofilms. We do IV chelation with our older son but very slowly at lower dosages. His metals load is almost within normal range after two/three years of chelation. We view any specific treatment as a way to unload the immune system so it can rectify itself and manage immune challenges. We no longer believe any one form of treatment is a cure all. Heavy metals treatment can be really challenging for someone who is immune compromised. I would check IgG subclasses 1 to 4, IgA and IgM before attempting IV Chelation.

 

All 3 of our children have gestational Lyme et al. All three are functioning at a high level of recovery. Original diagnoses would have been ASD (DD), Asperger's (Younger DS) and PANS (Older DS).

[lbee]

Viruses and Bacteria attached themselves to metals.

 

I saw a great documentary on how the sunken Titanic is covered with biofilms called 'Rusticals'. When some Rusticals were pulled from the ships hull and tested they found 5 different types of bacteria's encased in a hard shell of a specific bacteria. These types of bacteria don't require oxygen but were eating the metal of the ship to survive. It is thought the ship will eventually deteriorate entirely from the metal eating bacteria.

 

I am using the above analogy so you can imagine why and how your DD might be collecting metals internally. When you pull metals you release the bugs often housed in biofilms. We do IV chelation with our older son but very slowly at lower dosages. His metals load is almost within normal range after two/three years of chelation. We view any specific treatment as a way to unload the immune system so it can rectify itself and manage immune challenges. We no longer believe any one form of treatment is a cure all. Heavy metals treatment can be really challenging for someone who is immune compromised. I would check IgG subclasses 1 to 4, IgA and IgM before attempting IV Chelation.

 

All 3 of our children have gestational Lyme et al. All three are functioning at a high level of recovery. Original diagnoses would have been ASD (DD), Asperger's (Younger DS) and PANS (Older DS).

That's an interesting analogy. I have been doing a lot of reading on the relationship between metals/bacteria/lyme etc.

 

Her IgG sublasses were ok... I think 1 and 3 were on the low/normal side.

 

I didn't realize chelation would take that many years? How old is your son ? May I ask what other treatments/interventions you've used for him? Right now our main/primary symptom is tics.

[sf_mom]

Low IgG Subclass 1s and 3s is typical with chronic Lyme.

 

Our older DS is 11 and started treatment for gestational Lyme et al at 6 1/2 years old. We've done many treatments over the years that include: combination antibiotics, anti-virals, herbs, homeopathy, ozone, HBOT, IV nutrients, IV chelation, mold detoxification, GcMAF yogurt, etc. He also presented with mostly TICS.

 

In our situation: Slow and steady has won the race. He is well recovered and most would not know he has Lyme. He does a monthly IV chelation.

[lbee]

Low IgG Subclass 1s and 3s is typical with chronic Lyme.

 

Our older DS is 11 and started treatment for gestational Lyme et al at 6 1/2 years old. We've done many treatments over the years that include: combination antibiotics, anti-virals, herbs, homeopathy, ozone, HBOT, IV nutrients, IV chelation, mold detoxification, GcMAF yogurt, etc. He also presented with mostly TICS.

 

In our situation: Slow and steady has won the race. He is well recovered and most would not know he has Lyme. He does a monthly IV chelation.

Thanks sf_mom, I'm glad to hear he is doing so well. How old was he when he presented with TICS? And How old was he when you started the chelation? I still don't understand why the chelation needs to be done so frequently for some people. Until recently, I naively thought it was a short term treatment. We will do a urine challenge shortly to see what comes out. But I am nervous about it.

 

Right now we are on augmentin/azithro for pandas... the medical docs up here won't acknowledge the bartonella titer as being significant so I need to go to the US and find an LLMD. She's too young for doxycicline, so I'm not sure what they will suggest for her.

 

We haven't started any herbals yet, but on rowinmom's suggestion I did ask my ND about Japanese knotweed so we may slowly add that in. We're still balancing out her other vitamins.

 

When you mention the GcMAF yogurt, are you referring to BRAVO? How are his tics now?

[sf_mom]

He was 5 1/2 years old when we first started this journey and thought we were solely dealing with PANDAS. He was probably 3 years into treatment when we started with low dose oral chelation and only one year ago we started IV chelation. He just had IV chelation last week and it no longer has a negative impact. His metals are almost normal with lead only being slightly out of range.

 

When we were seeing Dr. K in Chicago he mentioned kids that presented predominately with TICs often did not see resolution of symptoms very easily. In his words, 'TICs can be persistent'. Although we saw improvement in overall symptoms from the HD IVIGs via Dr. K and treating for PANDAS some tics remained. Unfortunately, HD IVIG was not the 'cure' we had hoped for but it did provide relief in symptoms at the time.

 

Now, 5 years into Lyme treatment our older DS has very few symptoms. Currently, his TICs are mostly resolved. When he wakes up in the morning he appears to be 100% recovered and has no symptoms of his chronic condition. As the day wanes, I might catch a very subtle transient TIC here or there. For example: he might cough and then I see a slight neck stretch. It is something that is unnoticeable to the average person but I still see it as a lingering symptom. His only other symptoms are poor handwriting relative to age/peer group but greatly improved, some nail biting of thumb nails, occasional dark circles under his eyes. We believe some of these symptoms if not all might be from chronic yeast. Chronic yeast is a by-product of long term antibiotics and chronic infections/leaky gut.

 

The other issue we are having with this particular child is that when we suspend or lighten up his protocol he starts to regress around six week mark. He just doesn't feel well and has mood liability/tears/fatigue (asks to be put back on antibiotics). As a result, we are pulsing treatment for shorter periods of time (one week off, three weeks on) and treating the yeast when off antibiotics. We will lengthen duration of pulse on/off antibiotics over time. We have been successful with the pulsed therapy with his younger brother who I would have consider much sicker but was never as immune compromised as this child.

 

He has no OCD, no headaches, no joint pain, no urinary frequencies which was horrible at one time, no separation anxiety, no anxiety, no other typical Lyme symptoms, weight and height are now in 90% for age, paleness 'gray' tone to skin has resolved and can keep up athletically when he was once unable. With his recovery his intelligence has skyrocketed. I only mention this issue because it is something that is has been noted by other families and high intelligence wasn't always the case for this particular child (just average).

 

I have met many families dealing with Chronic Lyme et al throughout our journey. My current take aways are.......... Chronic Lyme is difficult to treat, it is a MUCH longer journey than ever imagined, slow and steady wins the race, it is critical to be well informed (read, read, read), build a team of Dr.'s if needed that accept your knowledge and understanding of your child, there is no magic bullet, it is the combination of treatments that has gotten us where we are with all three of our children, don't be afraid to switch things up if something isn't working.

 

They do get better.

 

Yes it is the Bravo yogurt for their elevated nagalase.

Edited August 24, 2015 by sf_mom