Detox, Folapro and phase II liver issues

[Misfit Toy]

First I would like to say, I am neurologically not too well at the moment. In fact, you know things are bad when you walk outdoors everyday and wonder where you parked. So, here's my question and a synopsis beforehand.

I had the liver test that Yasko wants done. My phase II liver came back awful with genetic problems, meaning in a way, it will be hard to bypass these problems. This was done in 2007.

I am loaded with lead. Loaded. Also, all of my neurotransmitters are high except for serotonin, neuroepinephrine, and that was it. Glutamate was through the roof. I am brain fogged to the max and fatigued to the max. I would say these are my worst symptoms. I was told to eliminate all glutamate containing foods. I am not trying to seem difficult, but I am trying but it's not easy and sometimes, I can't do it.

I was reading Fredds post about glutathione. Glutathione makes me so sick. I can have 1/2 a mg. by IV and that is it.

I started folapro. I also have actifolate. I can not do the entire simplified 5. It is too difficult for me. I was on the folapro and B12 a couple of years ago. I felt like I was on speed. I was exhausted and hyper all in one. After a few months, my body went bizerk and then I had to quit them. The irony of that is, my brain within one week after quitting felt clearer than it had in SO LONG. That was after I stopped them. It lasted about 2 months and then I went back down again.

Can I just take folapro in teeny tiny amounts without the B I2 or do I have to take both?

Also, does anyone else feel awful from glutathione? With me, less is more. When I do too much, it wears me out and makes me sicker.

Today I went and had a myer's push with a smidgen of glutathione. Reason being, as I had written in another post, I had EDTA on Thursday and I became bedbound. So, I needed to pull out of it. The Myer's push relaxed me, but did nothing for energy. However, I feel better knowing that I got some much needed minerals in my system.

Any thoughts would be appreciated. If you could, try and make it semi easy to understand. I used to be rather smart but am feeling quite stupid at the moment.

 

[Misfit Toy]

I feel like I should delete this.

 

[MEKoan]

Don't delete. I can't say that I understand what you wrote but I don't know anything about any of the things you are asking about.

What I do know about is feeling the need to delete your post after you post. I think it usually means you really should leave it there because it is sufficiently important to cause you to feel uncomfortable. People here are very nonjudgemental, as you know. Someone will come along who understands all of this stuff. Maybe RichV can help you.

No one will judge you.

Promise!

 

[Misfit Toy]

Thanks Koan. I don't think that it's that people don't understand it. There are posts on here far more demanding in intelligence than mine. I think sometimes that that is the problem. My question is simple. And maybe it's just my warped over detoxed-toxic brain and mood, but I feel that that is the problem; my question is simple...too simple for some. And you are right, it is uncomfortable!

 

[gracenote]

Spitfire,

I think these detox issues are very complex. I'm on the Simplified Yasko right now had to work up to the minimum dose but I am so confused by this whole issue that I stopped reading the threads about it. And some of them are very long.

I did the Vitamin Diagnostics test which showed that everything is out of whack. I have not done any genetic tests. Feeling toxic all the time is a big problem for me. Right now my only real strategy is coffee enemas. They help on a temporary basis, but are not solving anything.

I am looking forward to the responses you get to see if some of them may help me.

 

[richvank]

Hi, Spitfire.

I'm sorry about what you are having to live with at this point.

You are not alone. There are others who haven't been able to tolerate the whole Simplified Treatment Approach. There are people who take only a crumb of one of the folate supplements, and they get a major detox reaction from it. Some people crush the tablets to powder, and then just pick up a little with a wet toothpick, and take that each day.

Yes, there are also other people who don't tolerate glutathione very much or at all.

The fact that you experienced improvement after doing the B12 and FolaPro for a while and then stopping suggests that as miserable as it was to do it, it must have been doing you some good. So I think that is a reason for hope.

I hope you can find a dosage that you can tolerate, and maybe you will be able to slowly climb out of the CFS "hole."

Best regards,

Rich

 

[Misfit Toy]

Thank you Rich. I needed that because I feel like I am going to cry and like I am quickly unraveling. I, who wrote a piece on not wearing your illness. Today I wear it...sadly. Thank you. It's amazing to me how one shot...one EDTA shot can put me in a stupor. A stupor with no exit sign. But why am I amazed when it happens with so many things that are supposed to make you feel better? Denial and a positive attitude is a wonderful thing. Come back denial!

What's even worse is the doctor(s) telling you you need this shot in order to get better, nevermind that you can't handle the detox it brings on. They saw the liver test. They saw it.

ANYWAY...thank you.

 

[gracenote]

We all have days and weeks and months like this. I don't think there is any shame in expressing it. We need each other, especially when we become so flattened after all our efforts to get better.

Hang in there Spitfire. And don't stop posting, please. We need to hear these types of experiences, too.

 

[MEKoan]

I'm so glad you didn't erase!

That was brave!

 

[Misfit Toy]

Thanks and HUG BACK to all!

 

[leaves]

Did you try detoxamin for your lead ?? Google it, it is pretty gentle, safe and effective also compared to intraveneous chelation. There is also a cheap generic form on the market.

 

[Dreambirdie]

Thank you Rich. I needed that because I feel like I am going to cry and like I am quickly unraveling. I, who wrote a piece on not wearing your illness. Today I wear it...sadly. Thank you. It's amazing to me how one shot...one EDTA shot can put me in a stupor. A stupor with no exit sign. But why am I amazed when it happens with so many things that are supposed to make you feel better? Denial and a positive attitude is a wonderful thing. Come back denial!

What's even worse is the doctor(s) telling you you need this shot in order to get better, nevermind that you can't handle the detox it brings on. They saw the liver test. They saw it.

ANYWAY...thank you.

Hey Spitfire--

I can so relate to doctor caused error/ignorance, the consequences of which I've been dealing with for over a year now. (due to the VERY BAD ADVICE of being prescribed HC, then iodine) The problem is that most doctors just cannot wrap their heads around how EXTREMELY SENSITIVE our nervous systems are. And... since they usually are usually horrible problem solvers, who are overly reliant on by-the-book learning for their answers, they rarely have a clue as to how to find the brilliant creative answers we need to remedy our condition. Fortunately, we have other options for help--like Rich, who really *GETS IT* about what's going on with us.

Please know, tho it's probably a small consolation when you are in the agony of a severe detox, that most chemically sensitive people cannot handle any of the strong chelators (EDTA, DMS, DMPS). You are not alone. One of the TCM practitioners I know, who has many years experience working with heavy metal poisoning, told me he's seen some people become so ill from chelation, that they've ended up in the hospital with kidney or liver damage, or or even in a wheel chair, unable to walk. He cautions everyone about the drastic effects that strong chelators can have. They mobilize the toxins out of the tissues of the body too fast for our detox systems, and our livers, to process them. Rich knows all about the biochemistry of why this happens, and I think he is right on target with his ideas about the methylation blocks, and how cautious we need to be at treating them.

I have also had strong detox reactions to the B12 protocol, and had to stop it until I'm strong enough to handle it. When I do begin it again, I'm going to proceed with it on baby doses, as Sushi did. (I hope she posts about her experiences with the Simplified Protocol; she's definitely on the right track.)

In the mean time, to help assist your body in getting the mobilized toxins to move out, you might consider some of the following: drinking water with chlorophyl in it, (I've used the World Organics Chlorophyl), eating fruit pectin (an excellent binder for toxins), and getting LOTS of extra fiber in your diet--like in regular bowls full of brown rice. All that really helped me, when I was overloaded with detox symptoms. I also was able to take fairly large doses of N-A-C, but since you can't handle the glutathione very well, N-A-C probably might not work for you. Also, inducing sweating (soaking in a tub with epsom salts or doing an infared sauna) was helpful for me too.

I do hope you move through this quickly. My best wishes to you! Please keep us posted on your progress.

 

[Misfit Toy]

Thank you. I am on bentonite clay which turns my stools into pellets. Enemas help too! It's safe...I like them for that reason. I love bathes, but here's the problem. My tub is pealing. Like a paint. I am in an apartment. In order for them to fix it; they have to have me vacate the apartment and use a toxic substance to unpeel the paint and then do it again. Well, I don't want that to happen. I need to go get a lead test kit. I have been too unwell to do it.

After the mineral push yesterday, I felt even worse. No sleep last night and where I live we are having a real heat spell. It's like summer here. It's nuts. I sweated all night from the detox and this crazy weather.

I will never have one of these shots again. DMPS made me much worse years ago. A doctor had me take that with 8 fillings in my mouth.

Thank you for your posts. I have never heard of detoxamin. Right now I think I am going to drink lots of water today and stick with what I know is safe. The fruit pectin is a good idea. I have slippery elm which is like the same thing. Maybe I will use that.

Thank you for these posts. I am learning a lot here.

 

[Dreambirdie]

Your welcome.

Even tho it is hellish now, try to remember that the detox will come to an end eventually. You will get through it.

ALSo... if you can dry brush your skin, that might help your lymph system get things moving.

Good luck!

 

[Sunday]

Yes, if we can't be brainfoggy and bemoan our lot here, where else can we do it? We can also do other things and feel other things, as with your article about not wearing our illness. But pain and confusion are a part of life. In the "healthy" world, we try to hide pain and confusion. But after having this illness for awhile I wonder how smart that is, even for "healthy" people (how healthy is it to deny real feelings?). It backfires.

About methylation: it kind of sucks, especially at the beginning. I did better by just accepting this. I'm on Freddd's Hidden Story protocol, which, with a couple of significant differences, is actually not so different from Rich's Simplified Protocol. I've been on it for 6 months. The first month, I had a "honeymoon week" where I actually felt like a human being and could plan activities and visit people and like that.

Then I crashed.

For two months.

Really really badly.


Every symptom magnified.

Ah, but during that time there was one significant difference: my weird foot neuropathies, always worse when my symptoms flare, got BETTER.

And after the two months, some of my symptoms started to lift. For instance, I'd been nauseated constantly, except when I took my marijuana oil to sleep (it helps nausea and nerve pain to a certain extent - and it sure heck helps my mood. Legal with a scrip in my state). Now I'm only nauseated for a bit in the mornings, usually, with occasional other bouts. A huge difference in my life. After the big crash, I was able to fly across the country and visit family for Christmas, and while I had to lie down a lot and pick my activities, I was able to do stuff and enjoy the visit and fly back. While I was out of it for a few days, it was more like being tired and less like being crashy. (I should say that acupuncture and Chinese herbs are a part of my treatment, too, when I can afford them.) That would have been impossible a few months before, before I'd started the methylation protocol.

But I have had bad crashes since. My improvements have not been dramatic but incremental and in a wobbling spiral shape, not a straight line. I have just added CoQ10 (ubiquinol form) to my pile of supplements. It really seems to make a significant difference in how functional I am, but early days yet. There are many, many variables in methylation protocol. It might take a long time to add them all and figure out which ones are most signficant for you. It might not feel good all the time. It helps to have a symptom list (Freddd provides a B12 deficiency list which I used, easier than thinking up my own). That way you can look at your list and even in the midst of brainfog it's easier to notice the small improvements.

I feel I am running on. I'm brainfoggy today because I pushed it a little yesterday. Anyway, each time you up your dosage or add a supplement, you're liable to get a jolt, as Rich (and Freddd) suggest. Can you try bearing with it? As Rich points out, if stopping makes you much worse, then that might point to the fact that, as bad as it feels to do the methylation protocol, you need it.

 

[Sunday]

Oh DB, thanks for the drybrushing suggestion, I'd read it here but forgot. My lymph system's really acting up.

Also thanks to you and others for the gentle detox suggestions.

 

[JanisB]

Did you try detoxamin for your lead ?? Google it, it is pretty gentle, safe and effective also compared to intraveneous chelation. There is also a cheap generic form on the market.

Hi Leaves, can you supply a link for that generic detoxamin. My Mom is paying a heap for the real stuff!

I've thought of taking it, but I've been worried that the 750 mg EDTA detoxamin would be too much. When I take .05 cc of i.v. EDTA, it is enough to make me sleepless, anxious, and get restless legs. (300 mg per cc - if my brain can do the math which is not always, I think it would be 15 mg of EDTA. Suppository supposedly absorbed about 35% would still be a huge increase in the amount of EDTA. Can people take 1/2 or 1/4 of a suppository?

 

[JanisB]

Spitfire
I also get wired from B12 and am taking almost none right now, so don't worry about taking a little Folapro or Actifolate and no B-12.

At a certain point, when you get back to your regular Dr., have him run an organic acids (Genova calls it MAP) to get the FIGLU and Methylmalonic acid readings. That will indicate better than anything how much you need more Folapro/Actifolate (FIGLU high) or more B12 (Methylmalonic high). Medicare covers this test.

Sorry about your EDTA crash. How much did he give you? Our doc here in Columbus has found a way to do chelation with us sensitive PWC's by using really small amounts of chelators -- like 1/12-1/100th of the normal dose through a slow drip. Most of us still get symptoms from it but we don't crash totally; we are just miserable for a day or two.

Dr. Yasko has sensitive patients get some EDTA by taking EDTA baths (she sells the powder); by using EDTA in creams and I think toothpaste; and by selling a low-dose 50 mg oral dose combined with garlic and malic acid.

 

[Big]

We live in an older house and the upstairs bathroom has just a tub, no shower. My wife and I used to use this tub all the time to relax/soak in. We both have chronic health issues. Finally my wife had some heavy metal tests run which showed according to the doc "shockingly high amounts of lead". We bought one of those test kits and the tub turned bright purple, it was all lead glaze.

I really would check that tub before using it again if you have metal issues, so many of them use the lead glaze and if it's peeling you can only imagine how much lead it's exposing you to. You can get a lead test for like $5 at Lowes or Home Depot in their paint section.

 

[dannybex]

Signs / Symptoms that one needs to back off of b12 / folates / glutathione...?

Hi, Spitfire.

I'm sorry about what you are having to live with at this point.

You are not alone. There are others who haven't been able to tolerate the whole Simplified Treatment Approach. There are people who take only a crumb of one of the folate supplements, and they get a major detox reaction from it. Some people crush the tablets to powder, and then just pick up a little with a wet toothpick, and take that each day.

Yes, there are also other people who don't tolerate glutathione very much or at all.

The fact that you experienced improvement after doing the B12 and FolaPro for a while and then stopping suggests that as miserable as it was to do it, it must have been doing you some good. So I think that is a reason for hope.

I hope you can find a dosage that you can tolerate, and maybe you will be able to slowly climb out of the CFS "hole."

Best regards,

Rich

Hi Rich,

This might be asking too much (!), but have you compiled a list of symptoms that people have experienced from starting the Simplified protocol too fast...or of being too sensitive for the folate or b12 supps / detoxing too fast?

I've been experiencing a lot of itching / prickly feelings -- had it in the past -- but it's worse than ever lately, and some tingling that comes and goes -- and the main thing I'm doing differently is taking the methyl b12 and folapro. Plus taking some undernatured whey (but have taken that off and on regularily, with no trouble.

Also have that extra-wired, restless, but of course exhausted feeling...like others here.

thanks in advance,

Dan

ETA: I just read Janis' and Joey's posts about Dr. Vinitsky's variation on the b12/folate protocol, where he suggests that many of these 'negative' reactions may perhaps be reduced or eliminated by taking a 5mg drop of "Folarinse" dropped on 2mgs of Perque b12 (hydroxyb12). Do you know of anyone who's tried this?

sorry for all the questions...