Chelation Chronicles – 1H 2019

This blog post is focused on my chronic health issues, specifically, learning to detox heavy metals using the Andy Cutler Chelation (ACC) protocol.  You can read about how I found ACC and chose to pursue it in this post.   This is my third Chelation Chronicles post, where I am regularly documenting the ups and downs I’m experiencing as I undertake detox from lead and mercury poisoning; you can read the first and second posts, too, if you like.

January

4 January.  Starting the new year on Round 41.  Just a few months until I hit the one year mark!  I’ll be continuing with the 18 mg of ALA, since that seems to be going well.  I’ll also add DMPS back in since I’m not traveling and (hopefully) I can handle all the pills without making any mistakes.

14 January.  Wrapping up Round 42.  On the whole it’s been a difficult few weeks leading up to Christmas, through the New Year and my first week back at work.  I’ve been tired a lot, and even raising my dose of ACE (to seven pills) doesn’t seem to make a noticeable difference.  I know some of it is histamine-related (even when I take HistDAO), because of the overnight weight gain.  I am not sure how much of it may be due to raising my chelator dose (both ALA and DMSA in the past few weeks) and/or after-affects of DMSA (which can trigger autoimmune symptoms).

I did go to the the acupuncturist on Friday, and he also gave me some herbs for liver support.  He said I really have to get my body moving (even if it’s just a gentle walk) to help my body detox.  I felt a lot better after the treatment and the herbs – I was able to do a gentle workout at the gym on Saturday, and then shovel snow and play in the yard with my kids on Sunday.  I felt so much better after moving.  But today I am feeling super sluggish again, likely due to something I ate. I can’t imagine working out.

I am so, so tired of feeling tired and low energy, and of the endless weight gain.  The weight graph on my FitBit looks like Mount Everest.    All this leaves me with the question of whether I should raise my ALA dose next week or not.  I suppose I should wait, but I am not really sure that what I’m dealing with is directly related to the chelators or whether it’s all the symptoms that flare as a result of chelation in general. I keep hoping that if I push I will eventually break out of the dump and be able to feel less miserable while I continue.  But that is likely the wrong way to think about it …

21 January.  Well, it’s been an interesting few weeks.  Last week I was a hot mess.  So tired, grumpy as a result, and really not in a good spot.  And then, within less than a week, something shifted dramatically.  I did have acupuncture (along with some Chinese herbs for energy and detox), and I always feel better as a result.  But this has been a whole other level of better.  I was able to help with shoveling after two snowstorms, I changed the sheets on all the beds, washed the linens and put them away.  I started a couple of new bead projects and learned some techniques that I tried and failed to do a year ago.  I also raised my dose to 25 mg ALA, with no ill effects so far.

Does this mean I am out of the dump?  God, I hope so!  But I suspect the big change is as a result of the compounded vitamins I was taking in the evening.  I order three months’ worth at a time, and I started taking this batch in October.  At that point I should have been at the tail end of the dump (August, September, October).  But, I was generally miserable throughout the holidays (through Thanksgiving, Christmas, and New Years’ Eve).  The biggest frustration has been histamine issues – they have been getting progressively worse, causing inflammation and fatigue.

I thought something was wrong with my vitamin formula when I first received it, but the manufacturer assured me that was not the case.  Nonetheless, when the new batch arrived, it looked and tasted quite different than the previous batch, and within a few days I had a really miraculous turnaround.  I wonder now if I am out of the dump; I am alternating between being really happy I feel better, and really bitter than it might have been the vitamins all along.  I am trying my best to focus on the positive.  However, I am no longer taking my morning vitamins, because they taste horrible and I’m no longer sure I can trust the manufacturer.  I am supplementing with a few pills for liver support and stress / anxiety (mostly GABA), and I feel like I’m doing really well.  I look forward to seeing how I feel in a few weeks’ time – hopefully better and better!

February

2 February.  I’m going through some weird fatigue at the moment, I wonder if it’s the dump rollercoaster or something else.  I feel so apathetic and lethargic – and it’s not just about one thing, but truly about everything from work to hobbies.  I have to wonder if it’s hormone-related as I had a ‘big sleep’ (two hour nap) today which used to happen regularly as part of my menstrual cycle.  It could also be related to GABA, but usually too much makes me dopey, not tired.  It could also be a bad reaction to exercise, as I did 30 minutes on the prolipse machine at the gym earlier.  But it was such a gentle workout I am hard-pressed to believe that was the trigger.

7 February.  Whatever weird apathy and fatigue I was dealing with is gone, and I feel like a cloud has lifted.  It seems like having the correct evening formula has made a huge difference – my histamine issues are largely gone!  I have been eating chocolate and/or almonds almost every day – and occasionally potato chips too – without any inflammation response at all.  I am not sure if the healing was accelerated by acupuncture or by chelation, but I’m thrilled regardless.  I still have to be careful (I am nervous to try shrimp or sauerkraut, for example), but I am so much less sensitive than before, and my quality of life has dramatically improved as a result.

11 February.  I am just wrapping up Round 46 today, though it’s Round 60 in round-equivalents.  The rest of my family is on Round 30.   I’m almost at the one-year mark, and in retrospect it has gone *really* fast.  I’m on ALA 25 mg and this was my DMSA (24 mg) weekend.  I am finding my DMSA weekends are the best ones, perhaps because I’m finally making progress on lead removal.

Overall I am feeling *really* good – I was euphoric all weekend! I felt more like myself than I have in ages. I found time and energy for cooking and laundry.  I was organizing like crazy, and not as sedentary as usual.  I am feeling good about giving or throwing away junk, including things that have been collecting dust in closets for 10-15 years.  I was also relaxed enough to help my kids with school projects, and to play first-person shooter games with them. 🙂  I know my relationship with them is changing for the better, and that is the most heart-warming improvement of all.

Somehow, I got done almost everything I wanted to get done, but without being rushed or anxious or stressed, and (just as importantly) I was able to let go of what I didn’t get done without guilt.  I am feeling so peaceful, so happy, and so SO hopeful about the future!

March

3 March.   Things are starting to pick up at work, so I haven’t had much time to write and reflect. Overall things are going well though. I am on my third round of 37 mg ALA and so far it has been uneventful. I was having some weird hot flashes, but they came on suddenly so I was hard-pressed to believe it was menopause – although I do turn 50 this year! I woke up one morning remembering that Milk Thistle (which I take to support liver detox) has estrogenic properties. I cut back from four pills at night to one, and the hot flashes have almost disappeared.

I did have a few weekends in a row where I felt amazing, and I have been really grateful for that. I have been going through closets and cabinets and bookshelves and getting rid of all kinds of things we just don’t need anymore. I gave away another six boxes of books – four to the library, and two to friends with younger kids. We gave away kids clothes, art supplies we’re not going to use, and more. I do have some furniture and lamps, too, but I am waiting to hear back from a local shelter to see if they are interested, first.

I feel a little less amazing this weekend, I suspect because I had to travel for work on Friday, and I have also been trying all kinds of random snack foods. I’ve been trying new things a little haphazardly both because I’m desperate for variety, but also because I want to get a whole lot of testing done once I’ve been chelating a year. I ordered new hair tests kits for myself and my family. I also want to check all my vitamin levels, my thyroid, and food sensitivities, too.

For the most part, all these little snacks don’t appear to have caused any inflammation (at least not enough to cause weight gain), but I definitely don’t feel 100% myself. Since most of them have a variety of nuts and seeds, it’s not a very good reintroduction. I will have to be more systematic closer to the testing date. I have also been having a little coffee with almond milk episodically, which also seems to be fine (yay!), though I do think it’s making my stomach extra acidic, so it’s not something I can do every day.

One thing that is new (and perhaps it’s just a sign of Spring) is that I am feeling like it would be good to exercise, even in some modest way. My body just feels sluggish and stiff from being so sedentary. In the past I worked out by getting up at 5 am and going to the gym before work. I am not sure I can push myself that hard right now, so I am going to have to come up with alternatives. I’m hoping as the weather gets warmer I can walk outdoors at lunchtime again. Finding ways to get a little exercise is something I need to actively think about, because what my acupuncturist said to me really resonates – I need to have at least some movement in order to stimulate my lymph nodes and support detox.

8 March.  Just posted to the ACC community on Facebook yesterday, and thought I would share my update here too:

I am headed into Round 51 tomorrow, I can’t even get my mind around it! It will also be my first round at 50 mg. I am so excited to be hitting these milestones!

I have not missed a week since I started. I am gradually coming out of the dump (after 8+ months), and as a result I have had series of really positive, high energy weekends. Overall, I am having more good days than bad, both on and off round.

If you had told me a year ago that I’d be here, I would never have believed it.

That is not to say I don’t still have loads of healing ahead of me. I have lead poisoning which will likely take years to unravel. I am still eating AIP and managing many other food sensitivities, and I am unable to exercise without a major flare or fatigue. Still have Hashimotos, Lyme + two nasty co-infections, and all the challenges that come with those diagnoses. I am also not able to lose weight, which is discouraging. BUT I am recovering faster from flares, sleeping better, and my mental state is so much better. And, random things like (after 25+ years) my toenails are finally growing back normally. LOL.

It’s rewarding to watch my family (spouse, DS11, DS9 all on Round ~35) making headway as well. Both my boys have special needs, and we haven’t had to raise their meds in over a year, though they are much taller and have gained 15+ pounds each.

Thanks to this wonderful community (and especially the admins) for their support and encouragement. SO HAPPY to be getting my life back, bit by bit!

April

15 April.  Today I’m wrapping up my second round at 75 mg.  I can’t believe more than a month has gone by and I’ve forgotten to write.  I think the main reason is because I am doing better all the time, and spending time doing other things beside obsessing about my health.

Around the time I hit the one year mark (52 weeks of chelation), I ordered another hair test, which just came back last week.  Here it is:I posted to the ACC Facebook group for feedback, and here is a summary of the feedback I received:

Mostly, they say “Mercury!” a lot louder than on the first test. Small variations like the Al, Pb, Sn, and Ti are well within the variation you’d get if you had enough hair from one collection date to do 2 tests.  The off the chart silver is a bit of a concern. It is nasty with mercury. If you have any silver in treatments cease them.

The test with the near Rule 3 and the toxics shouting mercury, is still a positive test, but not as obvious a one. We get to ‘no [Counting] Rules met’ long before we are done.  Disclaimer: Andy did not know what to think of hair tests taken while chelating as we are shifting mercury about and that affects mineral transport, but … an overall trend downward for mercury is likely truth.

When a test meets one or more Rules (or is even suspicious) you can’t trust the values as being body load. Lithium < 0.004 is one exception, Copper in the red is another, and Manganese in the red may be real. So do not supplement by a hair test unless it is very normal, then you likely won’t have any severely low elements anyway.

Your hair test shows much improved Thyroid, adrenal and blood sugar.

One of the admins who was seriously poisoned has been plotting his hair test results on a graph, and comparing it to the baseline that Andy provided in his book.  He has found all the metals trending down over time.  I am tempted to do the same, and if I do I will share it here.

In terms of other issues, my histamine issues are not completely resolved, but are much less serious than they were.  I’m not sure whether that’s due to chelation or the Chinese herbs I’ve been taking to support energy and detox.  Regardless, it is a relief to not have to manage that quite so closely as I have in the past.  I am making an espresso with almond milk and maple syrup almost every day now, and having a few pieces of GFCF chocolate every couple of days.  It is nice to be able to indulge just a wee bit after so many years of being strict, although I know I would feel even better if I could go without both.

The onset of menopause appears to be real, even after reducing Milk Thistle.  I did say I would rather now than after chelation, so be careful what you wish for, I guess!

I have been able to reduce carbs a bit.  I’m not back to keto but trying to keep to 25 grams of carbs (e.g. a quarter cup of rice) per meal.  If I cut back more than that I end up eating junk, which defeats the purpose.

I have also found energy and interest in exercising again as the weather gets warmer, and the one week that I walked outside three times I did lose a few pounds. So, I am hoping as both I and the weather improve I can do more of that!

22 April. I realized it might also be good to post briefly about my kids. They are plugging away as well.

DS9 was taking the liquid ALA but we had maxed out the largest syringes we could find, so he had been stuck at the same dose for a long time – months. Since that ALA is in a fruit syrup, we’ve been worried about his teeth and weight gain. Combined with the chocolate ACE he is starting to look a little chunky, and he’s always been super lean.

So, we finally decided to take the plunge and teach him how to take pills. He is the youngest, smallest, and the least toxic so he should be done first! He learned using a video and technique that was shared on the Fight Autism and Win Facebook group (which is now closed).

This approach was tested with over 400 kids, and at the beginning he looked at me despairingly and asked “am I going to be the only kid who isn’t able to learn this?” But learn it he did (well before the 14 days were up), and it was a really exciting moment for all of us!

You can find the complete video for parents on YouTube, the abbreviated version of a practice session for kids, and the 14-day tracking worksheet on the researcher’s website.

We’re gradually phasing out all the vitamin / supplement powders (Vitamin C, Magnesium) and liquids (Zinc, Vitamin E) and switching to pills for both kids. That is a welcome relief because it always resulted in a prolonged dinnertime. The two pills per meal (from Everything Spectrum) is so much easier for everyone.

We haven’t noticed many changes in DS11. He was on 18 mg for a long time, because between violin before school and wrestling after school he was really tired all the time. We didn’t want to add any other variables to the mix until wrestling was done. We just recently raised to 25 mg ALA. He has had the occasional headache but in general seems to be doing ok. It seems likely (based on some regressive behavior at home) that he is likely in the dump.

I guess – looking back on what I’ve written the past few months – I should also mention that I am on a very gentle rollercoaster of ups and down. I have weeks (like this one) when I am really fatigued and a little discouraged. But at other times I have little breakthroughs. This weekend (in spite of being a little tired and cranky) I painted fingernails and toenails for the first time in months. I have been collecting a small pile of broken things in the corner of my home office – toys, jewelry, etc. Some of the items have been sitting there for 12-18 months. But yesterday I just decided it was time to get it done, and I went through and glued it all back together. I also repaired some jewelry for my mom, restrung a few pieces, and got back to some bead projects that have been languishing for months. For me the rollercoaster implies dramatic shifts, but I am finding those shifts much more subtle – it’s more like rolling waves. My spouse describes it like a sputtering engine, which feels a bit closer to the right metaphor, at least for me. However you want to describe it, I still have no complaints. In the end it’s all progress!

25 April.  Tomorrow I’ll start my fourth round at 75 mg ALA.  I still can’t believe it, to be honest … nor the fact that in May I’ll go up by 50% to 112 mg.

The image below depicts the little pill case that I bought to carry my chelators around with me:

I like it because it has eight slots, which permits me to carry 24 hours worth of chelators in one small container.  On inside left I taped my future doses so I keep my eyes on the prize; 112 mg is the next increase, then 168 mg.  Max dose for adults is around 200 mg, which I will have to stay on for 6 months with no symptoms – then in theory I’ll be done with Mercury.  Some people who are super toxic attempt rounds at 300 or even 400 mg.  Since I’ll realistically be chelating lead for the next few years, I may try some of those higher doses at some point.   In fact, as I continue to improve I really wonder if my issue has been more lead than mercury all along.  But in any case it’s all progress!

May

3 May.  I am super excited to be starting Round 58, with a dose of 112 mg.  Here is the update I posted to Facebook today:

Hello my toxic friends! I am doing a happy dance this morning as I start Round 58 (Round 75 in round-equivalents). I just raised my dose to 112 mg ALA. I am so excited and can’t believe I’ve made it this far!

Since some of you have asked in the past, here are some details about my dump phase:

After having crowns lifted, fillings removed, bitewings checked, I did 16 rounds of DMSA (I have lead poisoning, too). After that I started ALA. I only did two rounds at 12 mg ALA with amazing euphoria before the peak of the dump hit, right on schedule, and I had to roll back my dose.

I spent nine weeks at 3 mg ALA, seven weeks at 5 mg ALA, and another three weeks at 8 mg ALA before I was able to raise back up to 12 mg. For those of you who are math impaired like me, that is 19 weeks (nearly 5 months) at low doses. But I was patient! And since then I have been consistently raising my dose by 50% every four weeks.

Before finding ACC, I truly thought that my life was over. I’m living proof that this protocol works, and that it is life altering! If you’re on the fence, this post is for you. I hope you’ll take the plunge.

June

20 June.   It’ts been six weeks since I posted, but a lot has happened in that time.  I was feeling really, really tired and run down, and as a family we decided to pause for the last two weekends in May, including Memorial Day.  The first weekend was amazing … just realizing what a joy it is to not be waiting for an alarm to ring.  And, it was also wonderful to watch the transformation in the kids.  We’ve been so worried about their bad behavior, but it seems like it was 200% fatigue.  They were positive, funny, affectionate, kind to one another.  It was really lovely to see.

During that time I also decided to revert back to a more strict version of my diet.  I have been on the Autoimmune Protocol for years, but I have successfully introduced eggs, rice, peas.  More recently I’ve been relaxed about almonds (especially almond milk), chocolate, and coffee.  So, I made a decision to stop the last three, and in less than a few weeks I lost ten (yes 10!) pounds of inflammation weight.  I know the almond milk is a factor, but I’m not sure if coffee and chocolate are or not.  So, I am experimenting again and hope I don’t have to stay super strict.

But, my father died on May 24th, and needless to say that really turned my life upside down – stress, fatigue, worry … and my schedule was in an uproar.  I can’t believe it’s been nearly a month since he’s passed, and, while there is still a lot to manage, I am back and work and back in my routine, still trying to find ways to take care of myself.  I think life is gradually returning to normal … at least, as much as can be expected after the death of a parent.

22 June.  I did five weeks at 112 mg (plus that two week break), so this week I jumped to 150 mg.  The next jump should have been 168 mg, but it was a weird number of pills (100+50+12+6), so I decided to go for a slightly lower dose in favor of simplicity.  It is still my second-to-last jump, so I have no complaints.  

One of the things I was looking into before my father died was weight loss stories.  I really wanted to understand how that plays out for people during and after ACC.  Based on reading the Facebook archives and reading stories (especially of admins and mods whose perspective I respect), here are the likely scenarios:

• After chelation is done, people develop the energy to exercise, and weight loss follows.  I experienced this a little bit during my two week break.  I was at my parents’ house and I wanted to be outside in the fresh air and walking.  I just wasn’t as tired, and definitely inspired to move.
• Similarly, some people take a longer break from chelation.  Andy Cutler says that our body does most of it’s healing on the breaks.  One person took a month off, felt a significant improvement in adrenals, and found they had the desire to exercise again.  
• Others have found that later in chelation (after the dump), they are able to continue the same diet and low exercise habits, but the weight somehow starts to fall off with no additional changes.
• Or, others find that later in chelation, energy naturally starts to re-emerge, and there is a growing desire to be outside, to walk, and eventually to run.   

It’s not clear whether I will follow one of these or whether my own outcome will be different in some way.  And, of course I have the extra challenge of major lead poisoning, which can also result in weight gain / retention.  Nonetheless, being able to drop ten pounds by being a bit more cautious with my diet has been super motivating.  I’ll be happy to hold steady for now.

I also signed up for Autoimmune Strong, which is a strengthening and exercise program designed by Andrea Wool, who is a certified trainer living with four autoimmune diseases.  She has some great guidance and suggestions about how to gradually strengthen core and other areas of the body before attempting to introduce cardio.  She reminds us that exercise is also a form of stress on the body, which can result in flares, so it’s important to pace ourselves just the way we do with new food introductions.  That is especially important for individuals like me who were athletes and struggle to reconcile that with the current state of their health.  I just started the exercises today, and I’m not exactly sure how I’m going to fit them into my routine, but I am going to try to figure it out!

30 June.  Somehow these six months have just flown by.  I’ve been busy with chelating and living my life, so these entries are getting more sporadic.  I’m not reflecting so often on the process – which is a good thing!

My youngest (now 10) is at his maximum dose and starting his six month countdown.  My oldest (almost 12) is three weeks away from max dose.  So, they will both be done before next summer, which is wonderful.  My spouse, on the other hand, discovered that multiple vitamins contained a ton of ALA (almost 350 mg a day), which would explain the lack of progress (and even backsliding) on health issues.  Now that we’ve sorted all that out, it seems like we’re all moving in the right direction again.  

As for me, after years on AIP and not being able to re-introduce new foods, I’ve rounded a bend where I’ve had the energy and the courage to formally introduce new foods.   So far I’ve tried bell peppers (success!), pistachios (success!), and grass-fed ghee through my mom’s amazing chicken liver pate recipe (success!).  Having new foods available to me has been super motivating for me, because one of the most difficult things I’m contending with is how hard it is between chelation and AIP) to be disciplined all the time, as well as the utter boredom that comes with eating the same limited foods.  That is not to say everything is perfect – I still seem to have a pretty severe sensitivity to sage, and to cane sugar, and to carrots.  I am not sure whether I’ll ever get over those or not, but I can only hope at this point.

I found a super clean almond milk called Malk, which doesn’t have any weird emulsifiers or gums in it.  I don’t seem to be reacting to it the way I did to the other brand, so I’m hoping the inflammation was due to the additives and not the almonds themselves.  Nonetheless, that whole process forced me to try new foods, and I’m loving being able to have pistachios again – it’s a welcome break from years of eating only almonds.

It also seems that my histamine issues are subsiding, I’m not completely sure what’s driving that.  Is it just that my toxic load is subsiding?  Is it hormone-related?  I’ve been able to have coffee (an espresso with almond milk and maple syrup) almost every day, I’ve had strawberries and even some citrus, and I’ve also been in the sun for several hours at a time with no rash and no major inflammation.  Honestly, that feels almost miraculous considering where I was just six months ago.  I’m not quite ready to try shrimp or lobster yet, but I am starting to feel less timid to try new things given the success I’ve had with other foods.

Next Friday I start my final / maximum dose of ALA.  A year ago I could not have imagined I’d be at this point – it will be Round 69, but Round 87 in round-equivalents.  That is a lot of sleepless weekends, but it’s been worth it!

All that said, I am feeling hopeful and positive as I head in to the next six months of chelation.  I’ll post another blog post like this one at the end of 2019.