23andMe results, feeling overwhelmed

[Vimy]

I have Lyme Disease. Currently doing the Evi Sapi protocol after 8 months on antibiotics.
I'm feeling overwhelmed by all the theories & protocols for methylation. I'm not seeing my doctor until next month but I don't want to wait that long. And when I brought up methylation on my previous visit he said he was still learning about it. So I'm not even sure he will be a big help.

I have the following mutations:
MTHFR A1298C ++
CBS A360A ++
NAT2 K268R ++

For the last 2 years I have 2 hydroxocobalamine B12 injections weekly. This seems to have helped alleviate some of my brain fog. But instead I have to use methylcobalamin?


Not sure if relevant but just to be sure:
When I use NTFactor ATPFuel I have much more energy, my brain is much clearer, overall feeling much much better. I would go as far to say I'm at 80 % when taking ATPFuel. But after 3 days, it stops working and makes me feel much worse Almost like a herx of some kind? After a few days waiting, I take the atpfuel again. Same results. 3 days good, then it gets worse. The first time the good effects lasted 10 days. If I could get the atpfuel to work all the time, I would consider myself healed enough to participate in society again.

Same thing with Glutathione.
I take lipsomal Glutathione. Feeling better for 2, 3 days. Then bam, it gets worse.


So I should follow Freddds protocol? Something else? I don't know. It's overwhelming the amount of things to read and understand, especially when you can't concentrate most of the time.
I don't want to make things worse but also don't want to waste another month waiting for my doctors visit.




Full results:

 

[JaimeS]

@Vimy, I have a theory regarding the stuff that seems to work for a handful of days and then cease. I believe that it can mean that you are low in some other cofactor that you require in order to make the energy you need. When you take the ATP compound, you push the cycle along faster, but this just means you run through what you were low in, and eventually run out:

I've hypothesized that a swift boom-and-bust is due to taking something that pushes an energy or metabolic cycle to go faster, giving you more energy short-term; but eventually you run out of one of the cycle's components, and it collapses.

A metaphor might be helpful. Your body is a lord over a poverty-stricken people, so the lord has been rationing. This means no one in the kingdom is ever fully satisfied, and they are making their anger known in many ways. The lord decides that the way to fix this is a week of feasting (taking a 'pushing' supplement). He invites everyone over to the castle for a huge party, and it's a great success, everyone eating and drinking all the food that was to last them through the winter. The kingdom gets to feel full and prosperous - for a little while. However, when the lord invites everyone to the castle on the eighth day, he finds the larders empty. Now, instead of rationing food out in tiny parcels, he's got nothing left to give them, and the people begin to starve. He can invite the people back to feast as often as he wants (you can continue taking the 'pushing' supplement) but there's nothing left to feed them (missing components of an energy cycle): they're 'used up'. Now, no one can eat anything, until the harvest comes and the lord can begin to once more stockpile. However, that could take awhile, and meanwhile, the people are angrier and more desperate than ever.

In other words, you may even feel more exhausted than before. I experienced something like this when I tried Rhodiola rosea.

I should say that my reaction was exactly like yours - a few days of feeling awesome, borderline normal, followed by a horrific PEM crash that sent me to bed for a day or two after. It took longer than usual to recover from, too: a few days, where usually I'm good after 24-38 hours.

-J

 

[Jonathan Edwards]

@Vimy,
There seems to be someone asking this question almost everyday and the simple answer is that genetic markers are not the basis for any sort of treatment. We do not have any clear evidence for methylation being relevant to Lyme or ME as far as I can judge and so taking supplements would need to be based on a demonstrated problem with levels of something like B12 or whatever. I think the reason why all the recommendations are so confusing is that they are mostly wishful thinking.

 

[Hutan]

Hi Vimy
I've recently got 23andme results too. I haven't yet worked out what I think about methylation protocols.

Have you run your 23and Me results through Promethease? It gives information about how your genetic makeup might increase or decrease your risk of medical conditions.

Of course a lot of this is highly speculative and of little value - supposedly I have a whole lot of SNPs that increase my risk of heart disease and and a whole lot that decrease my risk and most of those conclusions are based on just a few studies with small sample size. Conclusions on complicated things like personality probably mean nothing.

But in the cases of medical conditions that arise from mutations in a single gene, I think the results can be a useful guide. For example, certain mutations make things like hemochromatosis, lactose intolerance and celiac disease possible - although not everyone with the mutations has the disease. These conditions may be directly contributing to your symptoms or making it harder for your body to fight infections or just get back to a healthy homeostasis.

So, I think, if you haven't run it already, the Promethease report might possibly give you a few ideas of things you can work with your doctor on that you may have missed so far. You might find some low hanging fruit that mainstream doctors actually have expertise in.

Best wishes