This is topic DMSA brain dead feeling lingering.... in forum Medical Questions at LymeNet Flash.


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Posted by mandy614 (Member # 16524) on :
 
I took dmsa for 3 days at 600mg a day.I stopped on Tues. I've been off 48 hours and still have splitting headache, brain pressure/dead feeling.

I'm supposed to get on a plane tomorrow but at this rate not sure if I can make it.

Does anyone know how long this remains in the system? Am I permenently damaged? I have been taking loads of chlorella and bentonite clay. Also activiated charcoal. Vit C fushes too.

Anyone have any thoughts on this drug and it's effects? Thxs.

mandy
 
Posted by lymeHerx001 (Member # 6215) on :
 
Oh no, I was gonna take this and see how I did.
 
Posted by Lymeorsomething (Member # 16359) on :
 
I have to take this soon too....zoinks!
 
Posted by Keebler (Member # 12673) on :
 
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I usually react harshly to most meds and certainly to all other metal reducers.

In my experience, without all the other things in your set and just DMSA, I noticed no side-effects at all - it was the easiest thing I'd taken, much to my surprise after disaster with EDTA suppositories. DMSA helped tremendously with clearing brain fog -- although I may have done it every other day.


You are most likely not permanently damaged but if this does not work for you, tell your doctor. S/he will have another way - or be sure that you combine this with other liver support so as to minimize the effects for you.


Oddly enough, DMSA has shown to reduce porphyrins in autistic children (probably since it lightens the metal load), so this should be fairly easy on the liver.

Still, everyone reacts differently and most doctors suggest every other day for taking this and on the off days, being sure you get all your vitamins and minerals. DMSA will pull out other minerals, too.

What do you mean by a Vit. C "FLUSH" - how much of that? Oral or an IV push?

-
 
Posted by TerryK (Member # 8552) on :
 
Some people have problems with DMSA because they are sensitive to sulfur. Others have problems getting rid of sulfur due to methylation cycle problems. CBS upregulation or SUOX polymorphisms. This may not be your problem, it's just another consideration.

I had a really bad reaction to DMSA. Brain fog that took a long time to clear. At the time, I didn't know that I had trouble clearing sulfur. I actually added sulfites and ammonia to my already toxic laden body.

This is somewhat complex but explains the CBS upregulation. Scroll down to CBS section

http://www.heartfixer.com/AMRI-Nutrigenomics.htm
"If I treat your Mercury overload with DMSA or DMPS, I will remove a toxin from your body, but if you are CBS (+), I will be adding to your sulfate/sulfite pool, and sulfate/sulfite overload due to the CBS up regulation is likely playing a key role in your sensitivity to heavy metals and/or your inability to clear them."

There are things you can do to help this situation if this why you had the reaction.

From a heavy metal standpoint, looks like you are doing pretty well in trying to get the heavy metals out.

To get rid of Sulfur
Molybdenum
Iodine (may cause a detox reaction)
Chlorella

Take Yucca when eating meat. They want you to sprinkle it on but I can't manage that.

These are recommended as well:

Charcoal and Magnesium Flushes

"Dosage: 1 to 2 capsules of charcoal, followed by enough Magnesium Citrate to produce a Bowel Movement within 8-12 hours. Once per week or more depending on testing and behaviors."

"If indicated on the Methylation Pathway Analysis and/or biochemical testing, charcoal flushes are used if ammonia is high or needs to be kept under control. The purpose of a charcoal flush is to soak up excess ammonia in the body. To complete a charcoal flush, give 1 to 2 charcoal capsules orally followed by enough magnesium citrate to be sure the bowels are moving. You may want to do a ``trial run'' with magnesium citrate to determine how much you need to use to produce a bowel movement within 8-12 hours. You can do this on a weekend, as that may be more convenient."


You can learn more about these issues at (I think you have to join):
http://www.ch3nutrigenomics.com/phpBB2/viewtopic.php?t=2852

I'm getting ready to fly to see my doctor so don't have a lot of time but I'll try to check back in to see if you have questions later today.

Terry
 
Posted by mandy614 (Member # 16524) on :
 
Thxs for your replies!

For the first time in 10 months I have gone off all meds because of this. I'm going to try a week and see how I feel.LLMD said back down to 300mg a day. If it's based on weight and I'm 100 lbs is this correct dosage?

Keebler, I've been doing daily oral Vit C flushes to bowel tolerance. Should I not do them daily? Will this help with ridding the body of metals?

Tosho-Thxs so much for that info, I might add in ALA and see how I feel from it since I'm off mepron for the moment.

Terry,

I think you may be right about the sulfites. I had the G6Pd enzyme deficiency test run and it was ok, but I'm not sure if this is specific for sulfa based drugs?
I have been taking bactrim and glut pushes with no problem. With the dmsa I noticed a rash like reaction on my arm. Maybe I do have sulfur issues... I was on yucca for amonnia I'll consider adding that back in. Thxs for the advice! I do have some liquid iodine. Should I apply to my body? That is how I've always used it as a test for thyroid function.

Mandy
 
Posted by Keebler (Member # 12673) on :
 
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It's a good idea, as your doctor suggested, to cut the dose in half.

You might also wait a few days at least before starting back up and then, you might try every other day at first - or even every 3rd day - with some good breaks away from it if you need that.

Terry has great ideas.

And - are you eating enough food? Be sure you are getting enough protein, carbs and fats to fuel your body during this stress and that you have enough bulk in your diet so that the spent food can absorb the toxins to carry on out of your body.


I don't know about the Vitamin C flushes but, overall, this might all be a bit too much and if you back off of all of it just a bit that might be easier on your body.

-
 
Posted by psano2 (Member # 11711) on :
 
What's DMSA?
 
Posted by Keebler (Member # 12673) on :
 
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Tosho,

Thanks for that Culter link that you posted above.

( http://onibasu.com/wiki/Cutler_protocol )


VERY intricate. Amazing detail.

-
 
Posted by mandy614 (Member # 16524) on :
 
Tosho,

There is so much detail what exactly is Cutlers protocol? He does use DMSA just in lower amounts and ALA?

When I called the pharmacist asking if my dosage was too low, she said DMSA is given in as small as 25 mg a day to 2,000mg a day!

I know it's by weight just don't know how much to take. Thxs for this additional info Tosho I should have checked before taking such a big dose.
 
Posted by mandy614 (Member # 16524) on :
 
OMG my pills are 200mg x 3 a day... he's recommending 12.5 mg building up to 25 mg??? This could have seriously caused damage.
 
Posted by TerryK (Member # 8552) on :
 
Mandy wrote:
I had the G6Pd enzyme deficiency test run and it was ok, but I'm not sure if this is specific for sulfa based drugs?

Not to my knowledge. The test is used to see if you are deficient in a specific enzyme but I know of no connection to sulfur. There could be but I looked to see if I could find something but didn't see anything off hand.

Mandy asked:
I do have some liquid iodine. Should I apply to my body?

Sorry, I can't answer that. I take a few drops of lugols solution internally.

If you have sulfur issues, ALA is not a good thing to take. I was on a lot of sulfur supplements but when I found out about the sulfur issue, I stopped taking most of them. I still take reduced glutathione without a lot of problems.

What happens to those who have the CBS upregulation is that nutrients get diverted and drained down the transulferation pathway rather than doing the job that they were intended to do. Also, we end up with more sulfites and ammonia which are poison to the body.

Even if you don't chelate, it is a good idea to have metal binders on board if you are being treated for bacterial or viral infections. Metals are released as the pathogens die.

Anyone who has trouble getting rid of heavy metals should consider that they may have methylation cycle issues. Not just the CBS upregulation but possibly MTHFR issues.

Terry
I'm not a doctor
 
Posted by mandy614 (Member # 16524) on :
 
Hi Terry

Thxs so much for your response. I think I recall a sulfur test which involves a swab? I'll look into this. I don't want to be poisoning my body if I am reactive to sulfites. By metal binders do you mean things like chlorella, zeolite, charcoal?

I assume I do have methylation/detox issues. I take the fola pro and perque b12 for methylation but have had no formal testing.

I wasn't able to take my trip. I can't fully explain my motor skills are really bad still as is my fried/splitting headache brain.

What do you think about adding back in a small amount of cholestyramine? I was on it, but Dr H took me off because I was losing weight. I did a google search and said CSM can help eliminate DMSA. However the CSM made me feel worse when I was taking it, headaches and GI issues... but now I'm on no meds so it might be different.

Might make me feel worse, but could possibly help get this crap out of my brain!
 
Posted by TerryK (Member # 8552) on :
 
Hi Mandy,
Sorry to hear that you aren't well enough to take your trip.

There is a urine sulfur test. The price has gone up a lot recently so you may want to search around if you decide to get it.
http://www.holisticheal.com/health-tests/all-health-tests/sulfate-so42-testem-quant.html

I've never heard that CSM would eliminate DMSA. I think the problem now is not DMSA per se but whatever DMSA has done to your system. I don't know if it would help get metals out of your brain but when I asked an ND that I was working with whether cholestyramine would bind metals, she said no. I have no idea if it would chelate them. Perhaps it would but I haven't heard that it does.

I was on cholestyramine when I had the bad response to DMSA. My response may have been worse without it, there is no way to know.

I would probably not use CSM since it made you feel bad before. If you have any stored biotoxins in your system, it will likely pull them out of storage and cause more symptoms. I have no way of knowing that for sure but that is what I would guess based on my reading.

If I were in your shoes, not knowing what the issues really are, I'd try to deal with the possibility of both metals being re-distributed (seems likely), and sulfur issues. You may have both.

If you still don't feel better after awhile, I'd seek out someone who knows a lot about chelating agents to see if they have any suggestions. Perhaps an LLND who does chelation?

Hope you feel better soon.

Terry
 
Posted by mandy614 (Member # 16524) on :
 
Thanks Terry, I'll look into both.

Best,
Mandy
 


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