heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
hi everyone,
i don't have insurance or any disposable income so haven't been able to afford genetic or MTHFR testing. however, my ND put me on one folapro/day (800 mcg) regardless, because i muscle tested well for it. i'm also taking sublingual hydroxyb12 and phosphatidyl serine, along with lots of other supportive herbs and supplements and various antimicrobials targeted at the chronic infections. anyhow, i started with 1/2 tablet folapro for a few days, began feeling strange so stopped taking it for about a week, started again with 1/3 tablet, then a couple days after that was slammed with intense brain fog, run-over-by-a-truck fatigue, sleepiness, a complete and utter feeling of sickness - i was pretty much unable to move or think. needless to say i stopped the folapro again, didn't take it for a couple weeks. two days ago i restarted at a tiny crumb - i ground up the pill in a mortar and pestle and plucked a crumb from the white mess - and again, after two days i am down for the count with all the same symptoms as before. this time they're slightly less intense, but only slightly, and still debilitating.
so, my symptoms from even a tiny crumb of folapro include excessive sleepiness, brain fog, feeling totally out of it, headache, and just kind-of feeling sick all over, like my body is working something out in an intense way. it's mostly a terrible feeling, but some small seed of it feels productive/healing. however, it isn't compatible with living/working/taking care of myself/being coherent/etc; i live alone and am solely responsible for my care and the care of my two cats, and i need to be able to work part-time.
this illness nearly killed me in 2005 - i was bedridden and slowly dying for a year - and since then i've been up and down, but never, knock wood, as sick as i was when it first hit so intensely. and i refuse to go back there. i'm definitely still ill, but am blessed to be somewhat functional, more functional than many folks who've been able to tolerate much, much higher doses of folapro with little to no additional problems. this has me confused. does anyone have any insight as to why a tiny crumb of folapro affects me in such a profound and incapacitating way?
also, i've been reading that i should avoid folic acid while taking methylfolate. my multi has a small amount of folic acid in it - i take alive multivitamin - does anyone know of a good multi that doesn't contain folic acid?
sorry for the jumbled post, and thank you in advance for any thoughts!
There are probably other companies that make a multi that uses methyl-folate instead of folic acid also.
You may also need support for other parts of the methylation cycle in addition to MTHFR.
Also, some say kick-starting methylation can move metals out of hiding. Perhaps this is what you are experiencing, and maybe you need to take some kind of binder (chlorella, etc.)?
If I were you, I'd discuss all this with your doctor, too.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4167 | From WA | Registered: Feb 2011
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
Is all your intake tested together?
Because there is so much in multiples that can uptset the apple cart, I stopped taking multiples years ago. You may want to try that. But testing it in exactly the manner you take all may tell.
Take care.
Posts: 9834 | From Washington State | Registered: Oct 2000
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
GiGi, i always ART test well for this particular multiple.. have for years. the intake isn't all together.. i'm gonna quit the folapro again for awhile and ask nurse A and dr D what to do. sending much love. <3
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
It's a complicated subject. I just started with the simplified protocol. I felt "something" as you say but I don't know what it is. I have heard that some people do that small curmb dosing.
My feeling, at this point, is that it may actually be correcting the defect - so, you (& myself) are experiencing the detox effect. Do you have metal toxicities or other things you are working through in a detox way?
I got the fatigue & increased pain - especially in my rib area. My body may have been sequestering toxins there for a long time... Just an educated guess. The improved methylation may mean that the body can excrete the toxins. It may be difficult for us, though.
I don't know & I only have a small amount of experience here. I have read about this issue with the methylation protocol. Maybe take a look at the phoenix rising forum? There's a section dedicated to methylation there.
Good luck & keep us posted if you get a chance.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
thanks sparkle. so what do we do if we can't tolerate it? i'm sort-of at a loss.. i've read of other folks having an extreme reaction to a tiny amount of methylfolate, but it seems pretty rare.
i've checked out the phoenix rising site a bit.. thanks for the reminder.
posted
pls go to MTHFR.net and read up on this mutation. This Dr is the best on MTHFR and he talks about why you should not start at full doses and what to take with each subset of the MTHFR gene.
Posts: 871 | From orange county, ca. | Registered: Jan 2006
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I suspect that you may have a CBS upregulation. If you do, that needs to be addressed BEFORE you go on folapro. If you have a CBS upregulation you will make more toxins and get no benefit from the folapro.
The best sites to learn about and ask questions about methylation issues are
This site is written by a doctor and is the best site I've seen that explains the methylation cycle and how CBS causes problems. Search the page for CBS.
Razzle made a good point. You may need something to bind heavy metals. Ask questions at the forums above. The developer of the simplified protocol may answer on the CFS group and I've had Dr. Yasko answer a question on the other list. No guarantee they will answer but there are some very knowledgable folks on those forums.
Other folic acids compete with the active form of folic acid which is why one would avoid other forms. You can do a search on the forums or ask questions there about that.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Thanks sk8ter!
The test is $150 on the mthfr.net site. It seems like a good deal. I was going to get a methylation panel. In order to get the one that Rich VanK recommended - I would have to go to a doctor & all of that. I called one doctor & it was going to be around $1000 to go & see the guy, get the test, have the doctor review it, etc... He was going to charge me $400 an hour to review it!
I'm going to post something on Phoenix Rising's forum & see if this test is just as good as the Vitamin Diagnostics panel. It may be different. The Vitamin Diagnostics methylation panel isn't a genetic test. I think it measures glutathione levels. So, they address it from a different point of view.
I think the Yasko test is around $500 - which is a genetic test. So, this is a good deal. I guess the more common this treatment becomes - the cheaper the tests will be.
I'm going to study it a bit further. I started the Simplified Protocol without testing & I think this may be a big thing for me judging how I'm reacting. It would be nice if I could get the supplements more customized to my particular genetic profile.
Some people on Phoenix Rising forum are doing other genetic tests that run around $1000 (I think) like the 23andme test. I wasn't really comfortable with that company since there's some controvercy about privacy & mixing up the test results.
They test for more things at 23andme but I don't want them to have my genetic material. I read that some companies actually put the samples on file or in databases for possible commerical use in the future.
That kind of freaks me out... Sorry if this is off-topic but I don't think alot of people know about that aspect of genetic testing.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I was looking at the Phoenix Rising forum... The new simplified protocol does not use Folapro.
All that folinic, folate stuff makes my head spin. Everyone has different genetic variations. I'm not sure why one preson would react but you might want to try the new simplified protocol instead?
You really have to read through all of this & see what may be the problem. The other forums Terry listed may be helpful, too. Alot of this research is new - so, we are all experimenting.
The study that some Fibro doctors did re: the simplified protocol was encouraging. A large percentage of people with Fibro did get good results from the new simplified protocol so t's worth keeping at it. I'm not sure what your main symptoms are but aches & pains are my biggest problem.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
I feel like this to some degree or other at all times .top post
.What is this product for/do?????
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
hi terry, i'm definitely using binders, have been for years. unfortunately they don't help much with my intense reaction to methylfolate.
any idea how one addresses/treats a CBS upregulation?
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I think molybdemun (spelling?) is for the CBS upregulation. Also, potassium is a big one on the methhylation protocol. Some people get very low potassiium... That can be dangerous. And glutathione...
I think I saw your post on the Phoenix Rising forum. Some people have replied. Did you check there?
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
hi sparkle, yes, i've checked there. so far everyone's ideas have been really helpful, though i'm not sure exactly what to think! i'll bring all the possibilities up with my practitioner when i see her next.
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