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Lead toxicity and DMSA

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Lucinda, Jul 11, 2011.

  1. Lucinda

    Lucinda Senior Member

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    I'm currently a patient of Dr Myhill's, and after having my initial consultation with her she suggested many different tests that would be relevant for me, one of which was a heavy metals test.

    Following the test, I received the results that I had abnormally high levels of lead in my body, and Dr Myhill suggested Chelation Therapy to get rid of it.

    I am to take three 250mg DMSA tablets, on one day of the week, every week, for three months.

    Anyhow, I started the DMSA last Friday, but felt very ill a few hours after. I do not know if this is a coincidence, or if it could be due to the DMSA. However, what happened is that my old problem with being very agitated/wired, and unable to rest returned (this is a problem I used to suffer with a lot, but had calmed down hugely since I've started following Dr M's protocol). This problem also causes trouble getting to sleep, and despite taking prescription sleeping tablets at 10pm I didn't sleep until 5am.

    By the next day (last Saturday) the 'wired' problem had gone and had been replaced by a level of fatigue much greater than before I had the DMSA. It is now Monday and I am still not recovered and feel much worse than before.

    So my question is - is this normal? I know when I started Perrin a while back I got worse before I improved (and it was the same symptoms that got worse). I guess I hoped I wouldn't have to go through that horrible detox phase again since I've been doing Perrin for a while now and wouldn't think that this DMSA would take me right back to feeling awful again since I've already done so much detoxing.

    What have other people's experiences been with DMSA? And do you think it is worth continuing with it?

    I am going to talk to Dr Myhill about this during my next consultation, but would like the opinion of other sufferers too.

    Thanks, xxx
     
  2. Adster

    Adster Senior Member

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    Hi Lucinda. DMSA has a half life of 4 hours, and really needs to be taken every 4 hours or you will feel really unwell, especially at those huge doses. Because it's not perfect in holding on to all the heavy metal, taking it every 24 hours means that you mobilize the lead(and mercury if you have any) and move some of it around as the levels of DMSA in your blood fall away. There is a protocol developed by Andrew Cutler that a lot of people use. It uses a very low dose (5-25mg typically) taken every four hours for a period of 3 days. You then have a break for 4-7 days, then repeat. Doing it this way means you reduce redistribution of the heavy metals, which is possibly what is making you feel so terrible.

    It is very likely worth continuing with, as long as it is done properly. Here's some more info, much of it is based on mercury but is relevant for lead http://onibasu.com/wiki/Cutler_protocol
     
  3. Mij

    Mij Senior Member

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    I took DMSA for high mercury but my protocol was quite different than yours. I took 2doses in 8 hour intervals twice a day for 3/days, and then off for 11 days to continue for 3 months. I don't remember the dosage in mg. I also had a custom formula with minerals etc, made up for me to take on the days off.
    The only symptoms I felt was that once in a while I would get a sharp pain in my kidney.

    I did not experience any "detox" type symptoms or feel ill but I did experience agitation/wired feelings but it went away over time. You need to drink a lot of pure water and have regular bowel movements every day. This is very important.
     
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Lucinda,

    Chelating is a tricky business and what Adster recommends has helped a lot of people. I think (pardon me if I am wrong) that EDTA is more specific for lead, but you probably have toxicity of other heavy metals as well.

    EDTA comes in a suppository which is supposed to be a gentle way to take it. I took it IV and it was hard--both in die-off and its effect on the veins.

    I have tried DMSA in conjunction with laser detox therapy and that seemed to work well. But Adster's point about the heavy metals being "dropped" when the level of DMSA goes down, seems to be very valid. Maybe ask Dr. Myhill about this. It is possible to redistribute heavy metals so that they end up in worse places than they were to begin with.

    Best wishes,
    Sushi
     
  5. Vegas

    Vegas Senior Member

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    With all due respect to the Doctor, I strongly suggest you to politely decline her chelation recommendations. Read up on Cutler. He may have his flaws, but he is truly the world expert in chelation. What you experienced was metal redistribution at its worst. Once you mobilize heavy metals you have to be able to excrete them. In other words you moved metal to more sensitive tissues, and probably only eliminated, in urine and stool, a very small quantity. Your dosage is 30x's what I am taking. Chelation will pay dividends, but it should never be pursued in manner in which you were prescribed. Please, don't do it again.
     
  6. Lucinda

    Lucinda Senior Member

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    Thanks for all your comments.

    Oh and I don't take it every 24 hrs by the way. I am supposed to take three 250mg DMSA tablets, on one day of the week, every week, for three months. So I take it once a week.

    I'll read up on the Cutler protocol when I have the energy. This is the problem though - I came to Dr Myhill with very low energy and brain fog so have needed to trust that what she tells me to do is correct, as I struggle getting my head around all the conflicting info out there. Up until I took the DMSA, I had been getting better on her protocol and developed a great deal of confidence in her. I'm suprised that so many people think that she goes about her chelation therapy incorrectly, when she seems so knowledgable.

    I'll have to talk to her about all this. I'm grateful for your comments, as it gives me a little more understanding in order to base a discussion with her on. The thing is she has loads of ME patients and am sure she has recommended the same therapy to countless people. So I assume that most of her other patients cope with it else she would have altered the way she does it? It certainly hasn't done me any good though. xx
     
  7. maryb

    maryb iherb code TAK122

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    Thank you for posting your experience Lucinda, what I've found from my experiences on forums is that many people on them (here) know far more about treatments and what works for us than many doctors. I have the utmost respect for your doctor but do believe we have to go off our individual reactions, heavy metals chelation is not something to be messed with as I found out to my cost. I too didn't understand the re-distribution possibility, for that reason the Cutler protocol is my aim after having my amalgams out. I'm sure Dr M-yhill will be okay if you garner your facts and approach her with a request to try it, if you decide thats what you want to do that is. Hope you feel better soon.
     
  8. justy

    justy Senior Member

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    Hi Lucinda, so sorry to hear that your chelation therapy has had this affect -especially after so many good gains with Dr Ms help/protocol. I dont have any direct experience of this but i would say that if i had a severe reaction to a new treatment or therapy i would either stop it or try a lower dose.
    My experiences so far with Dr M are that she is great but not infallible -we havent seen eye to eye on everything, but in the main i agree with you that she is on the right track with her patients.
    Take care, and i hope you get back on track soon. xxx Justy
     
  9. Lucinda

    Lucinda Senior Member

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    Thanks Justy.

    It's frustrating as as you know, up until taking the DMSA I had been improving a great deal following her protocol. I was happy I had found a doctor who understood what was wrong and knew what to do about it.

    I'm so confused now though. After all my improvement, I've gone backwards. Since taking the DMSA my energy has plummeted. I haven't been able to dress, shower, move much, and can't talk or type much. I spend so much time in bed. I've been trying to build up the energy to type on here since last Friday, and am only just managing it.

    Luckily I've got a phone appointment with Dr M this Friday. I hope that this issue can be solved and she doesn't just tell me to carry on. It did seem a lot when the pills first came through to take 750mg all at once in the morning, and then nothing for a week. Just seemed like a very high dose from what little I knew about DMSA, but what do I really know about chelation therapy? I'd never even heard about it until Dr Myhill suggested it, and she didn't tell me anything beyond "it'll get rid of your lead". Never mentioned that it could have bad effects.
     
  10. anniekim

    anniekim Senior Member

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    Sorry you are having a bad time on your current chelation protocol. I hope your doctor can help you

    May I ask which heavy metal test you did? Reading a little bit on the Internet about heavy metal testing, it seems lab reference ranges vary widely. Eg one lab for a hair heavy metal test gave any level over 1 mcg / gram as high whilst elsewhere I've read 15 mcg/ gram as high, that's a huge difference

    I would say if anything is making you much worse, I would not continue

    All the best
     
  11. Adster

    Adster Senior Member

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    I hear that you feel confused now getting such conflicting information on chelation. You are probably not sure whether to trust her knowledge or ours. There's every chance that she'll say it's fine and to continue as you were. I'm worried that you'll get far worse if you continue with such high doses at such long intervals. It's hard on the adrenals even on the cutler protocol at 5mg, it's no wonder you are so exhausted now. Going on what I've learned, it's very bad for you to use high doses, so I'd urge you to be firm in telling her that you don't want to continue the DMSA using her dosing schedule, if you decide you don't want to. It's likely to make you worse if you do it again. Hopefully you'll get your strength back soon. Keep up the vitamins, especially the antioxidants. Drink as much (lead free, ie filtered or bought if you don't trust your pipes)water as you can handle.

    Hang in there.
     
  12. justy

    justy Senior Member

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    Hi Lucinda, i feel really terrible about how you are feeling right now, i know you have worked so hard to get where you are -it must be such a huge blow.
    I think you need to listen to your own instincts about the chelation agent. If it where me i wouldnt take it again (particularly at that dose)until i had got back my strength (unless Dr M has a very good reason to do otherwise)
    From my perspective she often seems to reccommend VERY high doses of many things, including supplements that some amy react to. Recently she prescribed me Thyroxine for subclinical hypothyroidism, she did listen to my concerns about dosage as i explained how sensitive i am to drugs and how terrified i am of another severe drug reaction that sets me back another year. so i think it best to really talk your concerns through with her on Friday. Your lead levels where very high so i guess you do need to do something to detox it. Have you got close to working out where it came from?

    sending lots of hugs (((( )))) Justyxx
     
  13. Lucinda

    Lucinda Senior Member

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    Well I did the one she sent me. I had to take a DMSA tablet first thing in the morning, then do a urine collection for the next 8 hrs. I don't really understand the lab ranges, the results were confusing, but she said that the lead was way too high.

    She also said Cadmium and Thallium were a bit high but probably in the acceptable range since the DMSA would amplify results, but that even taking the DMSA into account the Lead levels were unacceptable. However all of the other metals were fine (including mercury, which from what I understand was actually fairly low).
     
  14. Lucinda

    Lucinda Senior Member

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    Adster - It's more that I'm worried how I'd do the Cutler protocol. If she won't support me on it, or hasn't heard of it, I'd have to go it alone. I'd then have to do all this research and stuff and don't feel I can do that. I want a doctor to support and help me.

    However she might allow me to try a lower dose, I'll have to see.

    Justy - Yes she does tend to recommend high dosages, but up to now I've been lucky and not reacted badly to anything (though I do worry about the high dose of clonazapam she's got me on, and the the length of time I've been on it. It really helps me but I've heard that the higher the dosage and the longer you take it, the worse it is coming off. However, everytime I bring up this concern she dismisses it).

    And no I had absolutely no idea where the high lead levels come from!!! It's one of the things that has been puzzling me. I researched lead toxicity and what can cause it, but none of it seems to apply to me. In all honesty, I expected the heavy metals test to come back normal, and was suprised when it didn't. x
     
  15. Vegas

    Vegas Senior Member

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    You can't compromise with chelation.

    Join the Yahoo FDC group, they can guide you with chelation. Talk to Myhill about doing Cutler's protocol, it is utilizing one of the same chelation agents she has given you, but only at a much lower dosage, and taken continuously every 4 hours (or less) for 3 day rounds or longer. How could Dr. Myhill not support a much more conservative chelation approach. Consider contacting Julie Anderson, in Seattle, and having her provide phone consultations; she is a Nurse Practitioner and is reportedly very knowledgable..and specializes in frequent-dose chelation.

    Large oral dosages of chelators are tolerable by some, but obviously you are not one of them. They are nearly as bad as intravenous chelators. I worked on dozens of class action lead poisoning cases involving kids. There were various exposures from battery manufacturing factory emissions to lead paint. Many of those children could handle i/v chelators with little more than some fatigue and irritability, but these kids were not like you and me. Your biochemical frailties preclude you from pursuing large dose oral chelators. You can't handle that volume of mobilized metal. Please, don't just compromise and try a lower dosage. You would be better off not chelating at all than doing what you have done, again.
     
  16. maryb

    maryb iherb code TAK122

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    I hear what you're saying Lucinda, its a scary thing to dive into something like chelation without the support of a professional thats why I suggested you speak to Dr M-yhill, if you e-mail her office they can sometimes get you a 15minute telephone appt quite quickly.
     
  17. Wayne

    Wayne Senior Member

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    DMSA - Heavy Metal Chelation

    Hi Lucinda,

    I'm so sorry to hear of your difficult situation. I have to agree with several others who have encouraged you to stop this until you become much better stabilized. When you mention above about "allow me to try a lower dose"; I would encourage you to think in terms of whether you should decide to take a lower dose, or any at all. It's your body, it's your health, it's your decision.

    I very much agree with this assessment. I actually find Dr. Myhill's approach quite disturbing. Heavy metal detoxification is not something to be taken lightly, and in my opinion, should to be initiated very slowly, so that individual reactions can be monitored.

    In addition, I believe various things should be done prior to starting something like this, such as acclimating the body to various types of clays (i.e., zeolite) that can absorb/adsorb toxicity. I believe clay foot baths (which I use) can be very effective (yet fairly gentle) in reducing heavy metal toxicity without the dangers of rapid heavy metal release. Why not gradually reduce our overall load before going with the "big guns"?

    I know this is not a popular topic for many people, but I myself would never, ever consider doing DMSA chelation without knowing how to do a coffee enema (CE). Alternative cancer clinics rely heavily on CEs for rapid detoxification, as rapid cancer dieoff can be very dangerous as well. Other important rapid detoxification aides might include epsom salt baths, FIR saunas, etc. I'm just a big believer in being very prepared to help the body eliminate dangerous mobilized toxicity as quickly and efficiently as possible.

    I don't know how accurate or up to date this might be, but a website devoted to some of the dangers of incorrectly using DMSA can be found at:

    http://www.dmpsbackfire.com/default.shtml

    I experienced some major mercury toxicity when I had some amalgams removed by a "holistic" dentist, who assured me he knew what he was doing. Well, he didn't. And I was so sick for a very long time afterwards. My own experience and everything I've read tells me heavy metal detoxificatin/chelation should be considered very seriously, and then be done very, very slowly, and very, very carefully.

    Lucinda, best to you as you try to cope with what has to be a most disheartening experience. Like Vegas, I would encourage you to pause for as long as it takes for you to get a much better take on when or whether you should continue this.

    Best Regards, Wayne
     
    Last edited: Dec 25, 2013
  18. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Lucinda,

    I also have found the need to be very, very, cautious with chelation, after some bad experiences.

    Re: mercury. It is hard to test for--even with DMSA provocation. It can be bound to viruses and other compounds and not show at its "real" level. So even though your mercury tested low, it might not be--particularly if you have amalgam fillings. So, while you "think" you are chelating lead, you may also be stirring up mercury.

    And I would be very surprised if Dr. Myhill was not familiar with Dr. Cutler and his approach. He is known very widely.

    I know that you are in a dilemma, but as Wayne said, you don't need "permission" here--it is your body and your choice. You do need guidance though and others have told you where that is available if Dr. Myhill did not support the way you decide you wish to do chelation.

    Very best wishes,
    Sushi
     
  19. Adster

    Adster Senior Member

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  20. Lucinda

    Lucinda Senior Member

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    Thanks for all of the replies.

    I talked to Dr Myhill and she suggested that I tried reducing my dosage to 250mg. Then, if that still makes me ill, then to e-mail her and she will think of another way of getting lead out of my system, and take me off the DMSA. She said it wouldn't be the DMSA itself making me ill, but me having a strong reaction to the lead being mobilised in my body. I mentioned the Cutler protocol to her, but she dismissed it.

    So I did as she suggested and took the decreased dosage, but it still made me more ill (though it was less of a severe reaction as when I took 750mg). However, I wanted to be sure it really was the DMSA making me ill, and not just coincidence (after all, my illness does fluctuate) so I waiting a week and took 250mg again, and again got more ill. So I'm pretty sure now that it must be my reaction to the Chelation Therapy as the same symptoms have got worse each time I have taken them, and it has always been at about the same time of day after taking the tablets that I get the reaction (it's always early evening, but I continue to feel more ill for a few days after).

    So I have e-mailed Dr Myhill and asked for either a more gentle way of getting rid of my lead, or suggested that perhaps we leave off detoxing my lead for now, since I was making steady, gradual progress on the regime that I was very happy with, before I started the Chelation therapy.

    As for going it alone and doing the Cutler Protocol myself - I really don't want to do that. I became Dr Myhill's patient as I have been going it alone for a long time trying to get better and been totally confused by conflicting advice and not enough support. And flippin brain fog and epic low energy doesn't help - I can't deal with researching stuff all the time. I just want to follow Dr Myhill now. Up until I took the DMSA she had helped my health more than any other therapist or doctor ever had, so I still have faith in her, I just think her protocol of chelating lead doesn't suit me personally.

    Lucinda xx
     

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