Suggestions?
Posted by TerryK (Member # 8552) on :
Have you tried dibenzcozide or perque? They are already converted to a usable form.
With being homozygous you would likely be low in b12. Seems like you may be kicking many things into gear while bringing b12 up to a normal level.
Are you taking the active form of folic acid with it? That is likely important.
If it were me, I'd take a very small dose of the active form of b12 along with the other supplements that are recommended for your particular mutation.
You may also have the CBS upregulation which would be making you sick if you don't deal with it first.
That's about all the suggestions I have except to say that it would be worth your time to post on the yahoo group and perhaps Dr. Yasko's group for more suggestions about what might be going on.
You will need to sign up in order to ask questions but it is free.
Terry
Posted by TerryK (Member # 8552) on :
One other suggestion - take in the AM - small dose.
Terry
Posted by dogmom2 (Member # 23822) on :
no suggestions, just wanted to let you know I had the same reaction, even at low dose. I had similar reactions to some other parts of the methylation protocol as well. couldn't do it.
Posted by canefan17 (Member # 22149) on :
I take in AM and with methyl folate.
Use 1/4 tablet and work up 4mg was rough on me too! Super anxious, brain fog, irritable, insomnia
Posted by TerryK (Member # 8552) on :
If one cannot tolerate the methylation protocol and low dose does not work then the CBS upregulation could be a problem and/or toxin mobilization from opening the cycle.
The supplements to open your cycle may be causing heavy metals and other toxins to come pouring out too fast. Consider adding heavy metal and other toxin binders. Don't take anything that will mobilize toxins, just things to help your body get rid of them.
Terry I'm not a doctor
Posted by vitamink (Member # 36646) on :
rich van k (the real 'methylation expert') describes this exact reaction, its possible causes and things that can help.
some excerpts:
"Quite a few PWCs have reported experiencing anxiety, a "wired" feeling, insomnia, hypersensitivity of the senses, and in some cases an elevated heart rate, especially when starting the methylation-type treatments."
"3. Additional supplements can be taken that tend to calm the NMDA neurons. Dr. Yasko has presented lists of them in her materials. They include GABA, magnesium, taurine, Valerian, topical progesterone, theanine, and others."
good luck! k
Posted by cocowyo (Member # 36286) on :
Wooooooooo hooooooooooooooooooooo!!!
I've been looking for an answer to this question for *years*.
It has been so frustrating/confusing to have this reaction to B12 when almost all of the research and anecdotal evidence says that B12 is supposed to be calming.
I will definitely talk to my doc about metal toxicity and show him rich van k's post. I'll also ask him about dibenzcozide and perque. I'm pretty sure I already talked to my doc about CBS, but I'll ask again.
Thank you!
P.S. - I'm taking 1000mg of methyl folate daily.
Interestingly, I energy tested negative for every B12 supplement at my last appointment.
I started looking at the B12/anxiety connection recently after a bad trial of chlorella (very high in B12) and an uptick in hypomania/anxiety/insomnia when I take a PMS supplement that has methyl B12.
Posted by nefferdun (Member # 20157) on :
Try Hydroxy B12. Read heartfixer.com to understand how the 30 mutations are so interactive.
" COMT degrades dopamine, in the process using up methyl groups. Individuals who are COMT (+/+) degrade dopamine slowly, and as such have a lot of methyl groups floating around. If we supplement a COMT (+/+) individuals with methyl-B12 (or any other methyl donor for that matter) we can �OD� them with free methyl groups, too much of a good thing, and this leads to mood swings related to fluctuations in neurotransmitter levels.
Individuals who are COMT (-/-) have normal COMT function; they break down dopamine rapidly, using up methyl groups in the process. COMT (-/-) individuals need and tolerate methyl donors quite well. So if you are (+) for the MTR up regulation and/or (+) for the MTRR down regulation, and you are also COMT (-/-), all we need to do is to give you methyl-B12.
We are giving you the methyl-B12 that you need, and any extra methyl groups left over can be put to good use. Conversely, if you are COMT (+/+), we know that you have an excess of methyl groups floating around. We will give you hydroxy-B12, expecting it to combine with the methyl groups available to form the methyl-B12 you need (without ODing you with too many free methyl groups). This is all very confusing, and it gets worse when we consider the individual who is (+/-) for COMT, and when we factor in how one�s VDR gene status interacts with their COMT status.
I will give you specific recommendations, whether you need methyl-B12, hydroxy-B12, or both in combination, in my analysis of your Methyl Cycle genotype."
Also get GABA. It is very calming. Limit glutamate rich foods like soy, peas, mushrooms, wheat and tomatoes (alas, my favorites) which are excitotoxins.
If you can afford it, get the whole methyl cycle mutations panel. MTHFR is just one piece of the picture. It is not my main problems at all. CBS/NOS is.
Posted by nefferdun (Member # 20157) on :
I just saw you are on the paleo diet. 90% of chronically ill patients have the CBS mutation. I am homozygous. When you eat meat you increase ammonia in your body. It takes two BH4 molecules to get rid of one molecule of ammonia so the BH4 is depleted. BH4 is necessary to generate dopamine, serotonin and nitric oxide.
Anxiety - depression? Change your diet. Even if you cannot afford the test, you can follow the treatment plan. It sure won't make you worse and more than likely you will get better. It takes months to reduce the ammonia. You have to be persistent.
You need to avoid sulfates and sulfites. Some supplements such as MSM have it so be careful what you are taking. Also foods like cabbage, broccoli, brussel sprouts, kale, spinach, soy and of course all animal products. You can supplement yucca and charcoal to help get it out.
Posted by cocowyo (Member # 36286) on :
@nefferdun and TerryK:
I highly suspect CBS upregulation after looking over some lab work from over a year ago.
Urine taurine - high Urine cystine - high Urine AKG - high Urine Ammonia - within range, but on the high end
All of these are "after" CBS in the methylation cycle.
D*mn it. I really like the paleo diet and sulfur veggies.
Thanks for your help ... I think :-P
Posted by tickled1 (Member # 14257) on :
Terry,
What kinds of things will help get rid of toxins without mobilizing them?
Posted by sk8ter (Member # 8671) on :
coco what test did you do for the above urine tests?What company?
Posted by cocowyo (Member # 36286) on :
Genova Diagnostics ONE Test Optimal Nutrition Evaluation
Link below.
Click "Sample Report" on the right side and scroll to page 8-10 of the document to see what is actually tested.
This doctor explains it the best.
Posted by canefan17 (Member # 22149) on :
The good news on CBS abnormalities is it's fairly inexpensive to treat (mostly just avoiding sulfar/sulfite)
Seems that Yucca root may help if you eat animal products for a meal.
Someone also told me that supplementing with alkaline products (like pleo-alkaline) actually frees up the liver (which is producing ammonia to neutralize the stomach acids) to do it's job.