what redistribution felt like for me (an adult), attention Moria (long)

[Guest guest]

Hi Moria,

This is the post where I give some background information and talk

about what redistribution felt like for me.

I have gluten intolerance, MS, chronic pain, chronic fatigue,

hypothyroidism, and adrenal insufficiency. I have been exposed to

large amounts of mercury over a very long time.

All of my amalgams were removed during the summer of 2004. I tried

NDF during that time (reported that experience in other posts).

My DDI hair test meets two counting rules.

My adrenal function is extremely poor. In many ways I am much worse

than most of the people with 's disease that I have talked to.

This is probably why I had so much difficulty after amalgam removal

and why I am so sensitive to chelation side effects. I think of

myself as the `worst case scenario'.

During the winter of 2004-5 I tried DMSA. I used 25 mg per dose,

every 4 h for 3 days and 2 nights. I felt very good, even better than

usual, while I was taking the DMSA. It was the day after I stopped

that I had problems. I had overwhelming fatigue. The most alarming

part was that I totally lost control of my thoughts. There was no way

that I could gain any control over my thoughts. I eventually

surrendered to the loss of control, lay down with my discman, and

played music to myself. I could not stop the tears. (I call this

type of reaction a `meltdown'). I can't remember exactly how many

hours this lasted. The first day was the worst and then it took

about a week to get beyond the fatigue and emotional part. I did this

to myself FOUR times before I finally concluded that the dose of DMSA

was too high for me. (The reaction was exactly the same each time, so

I know that the side effects are reproducible). I tried one round at

18 mg DMSA and I had 24 h of manageable fatigue at the end. That was

the last time I tried DMSA.

One of the problems that I had was waking up at night. I decided to

try DMPS because of the 8 h timing. I am hoping that I can improve

enough on the DMPS that I will eventually be able to wake up

consistently at night so that I can use ALA.

I tried DMPS at a dose of 25 mg every 7 h. I started to get side

effects on day 2 after the 5th dose. I stopped the DMPS then because

of the side effects. The reaction was worse than the ones with DMSA.

There was fatigue, my thoughts were totally mixed up, I couldn't stop

crying, there was nausea, I felt really awful. The next day I felt

like I had been hit by a truck – exhausted, achy, and emotional. I

couldn't even speak for fear of crying. It took a week before I

recovered from that reaction.

I cut the dose of DMPS to 10 mg for one round, then 12.5 mg (every 8

h) for one round. There were no reactions at those doses. At 18 mg

per dose I get fatigue, achy, emotional at the end of the round, but

it is manageable, so that is the dose I chose to continue with.

The difference between 25 mg and 18 mg doesn't look like much on

paper, but there was a huge difference in side effects for me at those

doses.

So far I have done three rounds of three weeks each time with 18 mg

DMPS per dose every 8 h (and a couple of short three day rounds).

When I stop I get manageable fatigue, emotional, and achy.

I have also tried 2 rounds of 3 days ALA at 5 mg per dose every 3 h (3

days and 2 nights). I continued with the 18 mg DMPS every 8 h while I

was taking the ALA and after I stopped the ALA. When I stop the ALA I

get 24 h of fatigue and some aches and pains. I can't really tell if

this fatigue is from redistribution or from waking up every 3 h.

There is no doubt in my mind that what I have been experiencing is

redistribution (of mercury or some other metals) because I am

generally ok while taking the chelators and a real mess when I stop

taking them (at the higher doses). I do eventually recover from these

reactions, so they are quite different from the long lasting type

reactions that are reported from adults who have taken high infrequent

doses of chelators.

The side effects that I get (difficulty controlling thoughts,

difficulty controlling emotions, fatigue, nausea) are the same sorts

of things that happen when I am stressed.

Just for comparison purposes I should mention that the reaction I had

to NDF was much more sudden, much more difficult to control (actually

it was not possible to control), and much longer lasting as compared

to end of chelation round redistribution. The NDF reaction was not a

typical adrenal type reaction. It really did feel like my brain was

damaged directly by the NDF.

Hope this helps someone

J

> this kind of description really is VERY helpful, and is

> quite rare, IME. If you would be willing to write more about

> the sensations involved, I, for one, would appreciate it.

> (I've been working on making a page with personal experiences

> relating to dose timing for a couple of years, and still

>don't have much material--- few and very far between.)

> What I'd like, if you are willing, would be:

> 1. repeat (I'm sure you've said it zillions of times,

> but it helps if it is in the same post) what chelation

> agent(s) you were taking when you experienced this

> stuff, and the DOSE. Any other specifics of how many

> doses taken.....or how used.... If it has happened to

> you with different agents (e.g. once with ALA, once with

> DMPS) include all the cases.

> 2. describe (if you know) WHEN the negative effects

> started to happen, and how long they lasted.

> e.g. at 3 hours xx started, at about 4 hours etc.

> How long each part lasted....when it subsided (if it

> did).

> 3. describe in detail what it felt like, e.g. what

> symptoms, where in body, etc.

> 4. explain if you have experienced this only once,

> or more than once.

> 5. explain how it differs if take another dose, and

> how soon you do that (e.g. do you do 3 hours for ala,

> or 2.5 or ?)

> 6. about when this happened (how long ago) might also

> be just sorta good background. And how many rounds

> or days of chelation you have done before/after that

> time. Just for general context.