I'm recently diagnosed with the C677T methylation disorder. I have late stage lyme and a long list of other issues. I have some questions after reading these posts, including Fredd's. I'd appreciate some input from you all, and Fredd. Thanks! Here goes:
1. I see Fredd's discussion on glutathione. I've been getting glutathione IV's for many, many years. Without them, I become like a person with alzheimers - seriously mentally impaired. With them I have some quality of life. The IV's also improved my immune system.
I'm beginning to build up on methylfolate and methyl b-12. I've been studying the protocol by Dr. Ben Lynch, and have begun at the bottom. I see Fredd says it's a disaster to take the glutathione, but I'm not sure what to do. I'd appreciate any advice.
Also my sister is taking glutatione IV's for Parkinson's and it's seemed to help her. Any thoughts on that?
2. Can someone point me to Fredd's most recent version of his protocol? Is there somewhere I can read a simple description of the protocol?
3. Do I need a b12 with two kinds of the b12? I've just been taking the plain methylcobalamin.
4. Dr. Lynch's protocol for methylation has you get on the Betaine TMG, but I read online that it can actually increase cholesterol levels. Does anyone know about this? Is it still important to take?
Thanks!
Hi AngieLynn,
I'll try to explain as best I can for your answers. Concerning glutathione. First, there is a the completely unexplored relationship of dose to effects. I would like to describe the people who were in the N=10 trial. ALL 10 of us, using our preferred or available varieties IV glutathione, un-denatured whey, commercial glutathione generating product or simply NAC plus L-glutamine, but large enough doses that we all felt some effects within the first day or two.
It may have been way too much, but were doses being enthusiastically touted by folks on the internet. All of us had already had 6 months or more of substantial healing with all of us having had partial methylation block, methyltrap and partial ATP block; basically ME and/or CFS and/or FMS. We were all pretty sick to begin with.
By that time I had achieved a high level of healing in all levels but the muscles. I had already had substantial CNS recovery, regaining feeling and motor control of my toes. I could move them and feel them move. I had been falling and didn't know where or what position my legs were in. I could see a wheel chair in my future, then I was able to reverse that substantially.
Also my sister is taking glutathione IV's for Parkinson's and it's seemed to help her. Any thoughts on that?
Yes. Very specifically on Parkinson's. Let's look at Parkinson's. It involves damage in the limbic system from apparent mitochondrial failure increasing MMA in the Cerebral Spinal Fluid along with generally a low cobalamin (B12s) level in the CSF which is a separate compartment form the body and has independent results. ATP is required to make dopamine.
It appears that lack of ATP generated in the neurons affects dopamine levels. As the whole methylation-ATP business is at least a 4 way deadlock (estimated 95%) with another possible dozen or more items having a low probability but some, of being a deadlocking item. So let's picture these limbic circuit neurons being partially disabled, irritated, inflamed maybe. The same is true of neuropathies anywhere in ones body.
Glutathione does indeed make these feel somewhat better, by turning them off even more and if continued long enough, making them totally non-functional and no longer painful. I haven't recovered in 5 years from much of the neurological damage and have been walking on broken glass ever since, not to mention the CNS cognitive and mood damage.
From having the SACD at about a 75% remission before glutathione. I'm struggling to maintain it at 50% remission ever since. By 6 weeks it was clear that it was doing damage to all of us and we all stopped the trial at 6 weeks. I couldn't ethically ask anybody to continue at that time. Increased neurological damage, CNS and peripheral, was not one of the disclosed risks. Had we known the very real risk of damage none of would have done that. However, it made clear what it was doing.
Now a person with what looks like "pre" or "pseudo" Parkinson's has much discomfort and often "intolerable" emotional sequences, i.e. anxiety, panic, fear, anger rage, homicidal rage and severe depression started by any or all of the Deadlock Quartet, especially AdoCbl and even more carnitine (ALCAR 90% or LCF 10% dependent upon person). So basically glutathione can put a person into methyltrap in several hours.
This stops methylation which can deadlock ATP sometimes. But basically, the first days of symptoms are methyltrap or partial methylation block start appearing in hours to days when the level of glutathione gets high enough (whatever that is). MeCbl symptoms start accumulating and coming back after the 3rd day and after more than a months partial ATP block starts showing up unless totally blocked by lack of carnitine which is likely in Parkinson's.
As most people who get glutathione symptoms put it, with "glutathione detox" is the return of symptoms. The catch is if the person has all the methytrap and partial ATP block in the first place they have no return of symptoms because they never left. So the only thing noticed is the soothing of the nerves.
. I see Fredd says it's a disaster to take the glutathione, but I'm not sure what to do. I'd appreciate any advice.
You know, at this moment I can't know what is going on. I do know that it is estimated by some researchers that 40% of what is diagnosed "Alzheimer's dementia" is actually B12 deficiency dementia. Also that 50%+ of people over age 60 are deficient in b12. As b12 is not a single thing, but rather at least a 5 different (AdoCbl-CNS, MeCbl-CNS, AdoCbl-body and MeCbl-body, and organs) there is not a simple answer.
http://forums.phoenixrising.me/index.php?threads/the-stages-of-methylation-and-healing.21725/page-19
On about half a dozen posts in the last few pages of the above thread there are lists of symptoms affected by which nutrients. At the beginning the layers of healing are described in decent detail, with the Deadlock dependencies shown on some other posts. Useful info is posted throughput that thread as people had things to say.
If you go and make a list of all your symptoms on each of those pages before glutathione and after glutathione, plus include whatever symptoms you had and now have that are not on those lists.
After you read the material we will be able to talk better. Many of your question may well be answered or reconceived after you read these pages. It's complicated. However, 100% of these things are based on people's responses. The hypothesis and theories came about because of the results. Two of the main pathways are pretty well known, the MeCbl-Methylfolate branch (ALS, MS, SACD, ME, FMS, CFS) and the AdoCbl-LCF (ALS, ME, FMS, CFS, Parkinson's) . There are other pathways and as you see, there are some items that appear on both. Now all this "arranging" is very much a work in progress.
There is a relatively easy way to demonstrate that glutathione flushes the active b12s in serum out in the urine very quickly. Inject 5 mg of MeCbl for several days without any glutathione in your system and with Metafolin. Observe your urine. Increase the dose until a just noticeable coloration occurs (towards orange if normally yellow, towards light pink if clear). Then take a large enough dose of glutathione. Then observe the coloration of urine.
I'll put my comparisons here for all to see. All injections were MeCbl of 20mg/ml concentration.
On folic acid - 2.5mg injection sc makes a just barely noticeable coloration in a few hours.
On Metafolin - 4.4 mg injection sc makes just barely noticeable coloration in a few hours.
On Metafolin - 4 x 7.5mg or 3x 10mg daily injection sc, makes 24 hr unmistakable tint in urine, mid-orange or medium pink
On Metafolin - 3x 60mg daily injection sc, dark orange urine
Glutathione On Metafolin 4x 7.5mg injection sc daily urine dark red or clear magenta. As I injected 4 times a day and found even that made no difference. It would all be in the urine. I got the same MeCbl symptoms starting on day 3 as when I go off it entirely for 3 days. It was redder than with 180mg a day injected. It was redder than 100mg single dose injection.
The only thing close was an EMT who tried a 500mg IV infusion described his urine, "Lurid". B12 is much more a magenta than red. Of course magenta and yellow make red. It almost looks like blood except it is clear whereas diluted blood is translucent.
This clearly demonstrates what glutathione does to B12, flushes it from the body much faster than with any folate or nothing. It flushes on the order of 100x as much b12 into the urine than is normal. That causes deficiency so severe that methyltrap starts in hours. It takes not complicated biochemistry or enzymes.
It is exactly like cyanide and nitrous oxide, it oxidizes the MeCbl or AdoCbl into a form that is rapidly excreted upon contact. One researcher MD told me on the phone, "glutathione is too dangerous to take in any way".