Detox, Folapro and phase II liver issues

[leaves]

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?

Yes the generic version is Kelatox see for example http://www.detoxchelation.com/?gclid=CJTIxb2K86ACFWV75QodAWaXHw. in fact if you mention this brand and the cheaper price to the people of detoxamin they will give you the same low price (lowest price policy). I never had a problem with it, it is a low dose and you can take rest days in between as needed. There is also a children version on the market if you want lower dosages. Good luck.

 

[Misfit Toy]

I will have to get that lead test kit. I wouldn't be surprised if it is my tub. PURPLE. That's awful. I have heard of an EDTA cream. Right now I just need things to calm down. I feel like my nervous system is on overdrive. It's a bunch of variables including the weather. It's almost 90 degrees here in PA. That's nuts. Jan, I have no idea how much of the EDTA I had. I had an IV and it took a half an hour to get it to me. I became dizzy immediately. I am glad I made the drive home.

I am just taking the folapro now. Like 1/2 of a 1/4.

Thanks for all of the suggestions. Does Fredd have a protocol online? Maybe he does and I just didn't see it.

 

[dannybex]

Hi Spitfire,

Fredd's protocol is here:

http://www.forums.aboutmecfs.org/showthread.php?188-B-12-The-Hidden-Story

Many, many pages, but interesting information. I think (not sure however) that Freddd has a different sort of genetic problem dealing with b12's/folic acid, so not sure if his protocol (or the doses?) apply to others here. Hopefully he will reply here...

???

 

[richvank]

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...

Hi, Dan.

The paste below is from a post I made on July 18, 2007. Maybe it will address your first question.
I have yet to take a good look at Dr. Vinitsky's approach, but I hope to do so after I have gotten a little more caught up with other things.

The following symptoms of CFS have been reported to have been corrected by various PWCs on this treatment. Note that these are gathered from reports from many PWCs, so that not all have been reported by a single person.

1. Improvement in sleep (though a few have reported increased difficulty in sleeping initially).
2. Ending of the need for and intolerance of continued thyroid hormone supplementation.
3. Termination of excessive urination and night-time urination.
4. Restoration of normal body temperature from lower values.
5. Restoration of normal blood pressure from lower values.
6. Initiation of attack by immune system on longstanding infections.
7. Increased energy and ability to carry on higher levels of activity without post-exertional fatigue or malaise. Termination of crashing.
8. Lifting of brain fog, increase in cognitive ability, return of memory.
9. Relief from hypoglycemia symptoms
10. Improvement in alcohol tolerance
11. Decrease in pain (though some have experienced increases in pain temporarily, as well as increased headaches, presumably as a result of detoxing).
12. Notice of and remarking by friends and therapists on improvements in the PWC's condition.
13. Necessity to adjust relationship with spouse, because not as much caregiving is needed. Need to work out more balanced responsibilities in relationship in view of improved health and improved desire and ability to be assertive.
14. Return of ability to read and retain what has been read.
15. Return of ability to take a shower standing up.
16. Return of ability to sit up for long times.
17. Return of ability to drive for long distances.
18. Improved tolerance for heat.
18. Feeling unusually calm.
19. Feeling "more normal and part of the world."
20. Ability to stop steroid hormone support without experiencing problems from doing it.
21. Lowered sensation of being under stress.
22. Loss of excess weight.


The following reported symptoms, also gathered from various PWCs trying this simplified treatment approach, are those that I suspect result from die-off and detox:

1. Headaches, heavy head, heavy-feeling headaches
2. Alternated periods of mental fuzziness and greater mental clarity
3. Feeling muggy-headed or blah or sick in the morning
4. Transient malaise, flu-like symptoms
5. Transiently increased fatigue, waxing and waning fatigue, feeling more tired and sluggish, weakness
6. Dizziness
7. Irritability
8. Sensation of brain firing: bing, bong, bing, bong, brain moving very fast
9. Depression, feeling overwhelmed, strong emotions
10. Greater need for healing naps.
11. Swollen or painful lymph nodes
12. Mild fevers
13. Runny nose, low grade sniffles, sneezing, coughing
14. Sore throat
15. Rashes
16. Itching
17. Increased perspiration, unusual smelling perspiration
18. Metallic taste in mouth
19. Transient nausea, sick to stomach
20. Abdominal cramping/pain
21. Increased bowel movements
22. Diarrhea, loose stools, urgency
23. Unusual color of stools, e.g. green
24. Temporarily increased urination
25. Transiently increased thirst
26. Clear urine
27. Unusual smelling urine
28. Transient increased muscle pain


Finally, the responses reported below are more serious, and I would classify them as adverse effects of the treatment. This list includes all the adverse effects of which I am aware at the time of writing this article, but I suspect that as more PWCs try this treatment with the assistance of their physicians, this list will grow. I am describing these as they have been reported on the ImmuneSupport CFS discussion board by the PWCs who experienced them. Though this information may be incomplete, and causeeffect relationships are difficult to determine exactly from the available information, Im hopeful that it will be helpful to clinicians and other PWCs:

1. One person had had a history of severe pesticide exposure and also autonomous multi-nodular goiter, which she described as follows: Gradually the right lobe grew to over 4 cm x 4cm, and had to have right lobe out. . . This same surgeon made the decision to leave the left lobe in, as I had always had trouble with thyroid med back then too. So, they restarted my Synthroid and I stayed on that for [a] few more years. I ALWAYS had shortness of breath and became VERY tachycardic upon ANY activity. . . This person started the simplified treatment approach on March 21, 2007 (actually using higher dosages than suggested for FolaPro and Intrinsi/B12/folate). On May 19, she went to an emergency room with tachycardia, chest pain, trouble breathing, trouble sleeping, elevated blood pressure and fever of 100.7 F. She was admitted to the hospital and released the next day. No evidence was found for heart attack. This person later reported the following: I followed up with my PCP and had CT scan of neck and chest and my goiter is causing tracheal compression, again, and breathing is VERY hard. . . My area hospitals can't do this surgery because my goiter grows substernal, deep in my chest. This person has expressed a desire to continue the simplified treatment approach, but is currently exploring the possibility of first having additional surgery on the multinodular goiter.

2. A second person had a history of lung problems due to both carbon monoxide exposure and exposure to molds, as well as heart-related symptoms. She started part of the simplified treatment approach on May 27, 2007. After having been nearly homebound for ten years, she was able to begin riding a bicycle. However, in early July, 2007, she went to an emergency room twice with severe breathing problems (shortness of breath), a fever of 99.8 to 100.1 F. that eventually lasted for sixteen days, and severe chest and left arm pain. No evidence was found for heart attack. She was diagnosed with an enlarged left atrium and diastolic dysfunction. She has currently discontinued the simplified treatment approach and is under the care of cardiologists.

3. A third person had a history of autoimmune disease, including Sjogrens syndrome. After her fourth dosage of combined FolaPro and Intrinsi/B12/folate, she experienced a moderately severe autoimmune flare, with numerous joint and soft tissue issues, fatigue, pain, etc. She also experienced a severe flare of Sjogrens syndrome, with very dry mouth, dry eyes, and severe eye pain. Six days after discontinuing the supplements, she had a thorough ophthalmology workup and was diagnosed with autoimmune scleritis. She has been given topical steroids and has reported that her eyes are greatly improved.

4. At least two persons experienced a temporary termination of peristalsis of the gut and consequent constipation after beginning the simplified treatment approach. In these two cases, induction of diarrhea cleared material from the gut, but did not restore the peristalsis. In both cases, peristalsis restarted twelve days after terminating the folate-containing supplements. One of these persons had a history of treatment with psychotropic drugs, including Klonopin. About 18 hours after starting to get relief from the constipation, she became very sick, with vomiting, vise-like headache, and shaking. She had many bowel movements over a ten-hour period, and then began to feel better. The other had a history of autoimmune diseases, including Sjogrens syndrome and Autoimmune Ovaritis, as well as diastolic dysfunction.


Rich

 

[Cloud]

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.

Absolutely....Spitfire I read through your post and really felt a connection with what you shared. I would never have thought anything bad about it. I feel intellectually inept at times and it's usually due to the fact that I used to be quite articulate, lol. They say it's still there....just beneath all the fog. Anyhow, I think simple is good. Using our God given intellectual abilities has surely been to our benefit, but too much can become little more than mental masterbation anyhow. Sorry to hear of your current condition....I do hope you get some relief soon.

I took my first dose of IM Hydroxycobalamin yesterday....Wow! Yep, very wired up...but not really, just more the old me. Other forms of B12 (IM and Sublingual) were like Kool-Aid....didn't do a thing. This response is fantastic and I intend to continue, but may wait a while to start the FolaPro. I too have detox problems, but I do feel much of it can be resolved. Here we go.....

 

[Misfit Toy]

Hey, I just wanted to let everyone know I had 1200 mg. of EDTA. 4 cc's. I talked to the doctor. He feels I am sick due to the loss of minerals.

 

[Cloud]

For many years coffee has been my one and only street drug. I don't drink, smoke, take illicit drugs....nothing! My 1-2 cups of fresh ground french roast in the morning is my one indulgent delight. But, I have come to notice that coffee is exacerbating my cfs symptoms including the right flank pain for 3-4 hours after consumption. I have seen hint of this having to do with methylation but can't seem to find much substantial info on this. Can anyone give me some feedback, links on this? Thanks

Spitfire....I'm happy to hear you may have found the cause of your symptoms and it's something that's quite treatable

 

[Big]

For many years coffee has been my one and only street drug. I don't drink, smoke, take illicit drugs....nothing! My 1-2 cups of fresh ground french roast in the morning is my one indulgent delight. But, I have come to notice that coffee is exacerbating my cfs symptoms including the right flank pain for 3-4 hours after consumption. I have seen hint of this having to do with methylation but can't seem to find much substantial info on this. Can anyone give me some feedback, links on this? Thanks

Spitfire....I'm happy to hear you may have found the cause of your symptoms and it's something that's quite treatable

It could be your adrenals. For years I would get right flank pain and always assumed it was my kidney. When I went on hydrocortisone the flank pain went away completely. I was also able to finally chelate once on it as well.

 

[Misfit Toy]

I used to be able to take cortisone or cortef. My adrenals don't tolerate it now. I don't know if anyone saw, but someone asked how much EDTA did I have and I was given 1200 mgs. INSANE. I am still so sick.

 

[jeffrez]

The best chelator for lead is DMSA. If you are loaded with lead, you probably will need to detox that before you can see much long-term improvement. You should join the frequent-dose-chelation group at yahoo groups and get some advice and direction there - many knowledgable chelation people are on that list and can help you out. GL

 

[jeffrez]

For many years coffee has been my one and only street drug. I don't drink, smoke, take illicit drugs....nothing! My 1-2 cups of fresh ground french roast in the morning is my one indulgent delight. But, I have come to notice that coffee is exacerbating my cfs symptoms including the right flank pain for 3-4 hours after consumption. I have seen hint of this having to do with methylation but can't seem to find much substantial info on this. Can anyone give me some feedback, links on this? Thanks

Spitfire....I'm happy to hear you may have found the cause of your symptoms and it's something that's quite treatable

Coffee is loaded with chemicals like caffeic acid and chlorogenic acid (the latter also found in artichoke) that stimulate bile production (which ordinarily is a good thing). That's likely where the right quadrant pain is coming from. You undoubtedly have some liver dysfunction and might have some developing gallstones. Liver/gb flushes can really help. Curezone is the place for that - they are the experts on liver flushing, in my experience. Gallbladder ultrasound - a very safe and non-invasive procedure - can confirm stones if you feel it's important to know for sure.

 

[Cloud]

Coffee is loaded with chemicals like caffeic acid and chlorogenic acid (the latter also found in artichoke) that stimulate bile production (which ordinarily is a good thing). That's likely where the right quadrant pain is coming from. You undoubtedly have some liver dysfunction and might have some developing gallstones. Liver/gb flushes can really help. Curezone is the place for that - they are the experts on liver flushing, in my experience. Gallbladder ultrasound - a very safe and non-invasive procedure - can confirm stones if you feel it's important to know for sure.

Thanks Mr Kite....great information. That's really interesting about those particular chemicals stimulating bile production. That could explain several issues for me. I did have an abdominal US and CT and both were mostly unremarkable for anything that might cause the pain. No gall stones but a thickening of the gallbladder wall (common with some of these infection). Also, gallbladder pain is usually more upper abdomen rather than out on the flank. Other than mild inflammation (also expected with these infections), the liver appears unremarkable as well. My Liver panel remains normal until I take in something toxic like antibiotics....then they will rise a little, but the right flank pain does as well. Many drugs will do that to me. I have a detox/methylation problem, but the pain does concern me that there is more happening than that. It would be nice if the pain were just gallbladder....take it out. I'll check out Curezone....thanks

 

[jeffrez]

Thanks Mr Kite....great information. That's really interesting about those particular chemicals stimulating bile production. That could explain several issues for me. I did have an abdominal US and CT and both were mostly unremarkable for anything that might cause the pain. No gall stones but a thickening of the gallbladder wall (common with some of these infection). Also, gallbladder pain is usually more upper abdomen rather than out on the flank. Other than mild inflammation (also expected with these infections), the liver appears unremarkable as well. My Liver panel remains normal until I take in something toxic like antibiotics....then they will rise a little, but the right flank pain does as well. Many drugs will do that to me. I have a detox/methylation problem, but the pain does concern me that there is more happening than that. It would be nice if the pain were just gallbladder....take it out. I'll check out Curezone....thanks

Not so - GB pain can extend not only to the flank, but also even around to the small of the back. That is good news about your liver function, though. I think a lot of stones might not appear on US until they are "calcified," though, so imho it still could be related. Yes - definitely check out the liver flush forum on Curezone - there are a lot of experts there with dozens or more flushes under their belts who might be able to help you narrow down the problem even more.

I know for me, I have some stones, but haven't been able to do a flush recently for various CFS reasons. I did one a few years ago and some small stones came out. But I would get the rt. quadrant pain from all kinds of things - eating even a little fat, ssris, etc. Last summer I got the idea to try taking coconut oil to see if the medium chain triglycerides would boost energy, and took a few teaspoons throughout the day. I guess I overdid it, because the next day I had really bad right side pain, and it lasted for a couple of weeks. When it was gone, though, I found I could now eat much more fat quantities (olive oil, nuts, etc.) than I could before, and the medications don't cause the pain anymore. So definitely having stones in liver/gall can cause the pain, and moving them out can help.

Even if you don't do a flush, there are herbs that can break up the stones and move them out over time, and ones that can keep the bile flowing well to help avoid problems. There is a hepatitis liver dr. of chinese medicine named Dr. Zhang who has some really good liver/gall herbs. I don't know if he consults anymore, but the herbs are still available on hepapro.com. I used to take Gall #1 and a few other things, became intolerant for various reasons, but now I take capillaris combination and I think it helps. And there are all the regular western herbs, too, like dandelion, artichoke, coffee you already know about , milk thistle, etc. that can help. The important thing is to first find out for sure what is going on, and then you can address it.

 

[Cloud]

Not so - GB pain can extend not only to the flank, but also even around to the small of the back. That is good news about your liver function, though. I think a lot of stones might not appear on US until they are "calcified," though, so imho it still could be related. Yes - definitely check out the liver flush forum on Curezone - there are a lot of experts there with dozens or more flushes under their belts who might be able to help you narrow down the problem even more.

I know for me, I have some stones, but haven't been able to do a flush recently for various CFS reasons. I did one a few years ago and some small stones came out. But I would get the rt. quadrant pain from all kinds of things - eating even a little fat, ssris, etc. Last summer I got the idea to try taking coconut oil to see if the medium chain triglycerides would boost energy, and took a few teaspoons throughout the day. I guess I overdid it, because the next day I had really bad right side pain, and it lasted for a couple of weeks. When it was gone, though, I found I could now eat much more fat quantities (olive oil, nuts, etc.) than I could before, and the medications don't cause the pain anymore. So definitely having stones in liver/gall can cause the pain, and moving them out can help.

Even if you don't do a flush, there are herbs that can break up the stones and move them out over time, and ones that can keep the bile flowing well to help avoid problems. There is a hepatitis liver dr. of chinese medicine named Dr. Zhang who has some really good liver/gall herbs. I don't know if he consults anymore, but the herbs are still available on hepapro.com. I used to take Gall #1 and a few other things, became intolerant for various reasons, but now I take capillaris combination and I think it helps. And there are all the regular western herbs, too, like dandelion, artichoke, coffee you already know about , milk thistle, etc. that can help. The important thing is to first find out for sure what is going on, and then you can address it.

Thanks Mr Kite.....again, great info. I hear ya about gallbladder pain radiating to the flank and back for some people. I think the chances are pretty good that your right about the backed up (unobservable) stones. Much of my history, symptoms and lab test results, point more in that direction. Besides, I would have been dead many years ago if this were a fundamental liver problem. Your the first I have found to talk of this same problem resulting from meds/toxins. Many people talk of "med senstivities", but they don't describe it in this same way, especially with the flank pain. I agree that pursuing the gallstone possibility is time well spent. I appreciate you taking the time on this. Off to Curezone.