Could it be folate?

[Freddd]

Last quick thought here.........

Maybe I do not tolerate folic acid OR folinic acid (the one found naturally in leafy and other veggies) in amounts that would be "healthy" for other people without an MTHFR, and THAT is why I had so much success with the Specific Carbohydrate Diet--as it reduced synthetic folic acid and the natural folinic acid in veggies in the diet. For instance, all veggies have to be cooked in Stage 1 of the diet, and raw leafy greens can't be added until the last stage.

Being only on methylfolate increases my tolerance for non-folic carbs, so to speak, and maybe if I am careful on timing and dosing, as Freddd has described, I can then maybe add folic/folinic foods --IF TIMED CORRECTLY.

Hi Rosebud Dairy,

I think that your IBS could be the folate effectiveness indicator. For me Metafolin makes it go away in the absence of folic/folinic/veggiefolate. You need to find how to heal that. Then you can find out what makes it come back. I can have a complete cycle in 10 days. It can come back on day 4-5 of folate deficiency and be gone by day 10 if I manage the folates better.

As deplin comes in 15mg doses and it might be given a couple of times a day, I don't know what a high dose wouild be. However, to recover from a folinic acid problem I found right away that a larger dose, 8800-16000 mcg was more effective than a smaller dose at overcoming the folinic sooner after stopping it. Overcoming the glutathione was toughest of all.

 

[readyforlife]

I was looking through some old blood test results and I was tested for MTHFR in 2008 and the results came back Negative. My doctor has me take Methylcobalamin b12 injections with Folapro. He wants me to take it the same time.

The protocolls of Rich and Freddd seem to work for some people, but as far as I see, most of them aren't fully healed yet. I think I found out why.

During my research I came across the MTHFR polymorphism and I wondered if most of us have it. This polymorphism hinders the conversion from folic acid to 5-methyltetrahydrofolate(Metafolin, 5-MTHF). I also found studies about Folate receptor antibodies. So there are at least two conditions that result in low 5-MTHF.

There is a product called Deplin, which is a high dose of Metafolin. It is marketed as a treatment against depression. It seems to do a great job. There are many enthusiastic articles about it on the net:
http://www.drugs.com/comments/l-methylfolate/

Both Rich and Freddd suggest the use of Metafolin(5-methyltetrahydrofolic acid), but it's a small dosage in comparison to Deplin. So I wondered if a higher dosage might help.

There is a guy called Dr. Smith who claims to treats CFS/ME successfully with Deplin and Methyl B12:
http://www.youtube.com/watch?v=3KylT1Muvq8

Watch the video, you might be quite familiar with this theory

I also found a thread from Karin:
http://www.mecfsforums.com/index.php/topic,7009.0.html
high dosages of folinic acid seem to help her.

They found a study about folinic acid(5-MTHF precursor)which supports this hypothesis:


yboldt14 takes 45mg of Deplin - which is a LOT - and it seems to work for him:
http://forums.bettermedicine.com/sh...agnosed.?p=298013&highlight=Deplin#post298013
http://forums.bettermedicine.com/sh...agnosed.?p=298390&highlight=deplin#post298390

Karin and yboldt14 seem to have a problem with folate auto-antibodies.

I started taking a high dose of Metafolin(15mg) for a few days and I definetly made improvements. My brain fog improved, my depressive mood is gone and I feel less fatigue. I feel quite happy at the moment.

I don't want to promise too much, but it seems to help. The Van Konynenburg Hypothesis(thats how I call it ) made sense to me right at the beginning.
Since yesterday I feel emotions, which I haven't felt for a long time

Thank you Rich for leading me to this point!

 

[Freddd]

I was looking through some old blood test results and I was tested for MTHFR in 2008 and the results came back Negative. My doctor has me take Methylcobalamin b12 injections with Folapro. He wants me to take it the same time.

Hi Readyforlife,

I am all the time experimenting. I haven't taken less than 8800mcg of Metafolin in a couple of years and lately I have been trying doses of about 18mg a day. However, I haven't yet tried 15mg single dose. You inspire me to do so.

The Solgar Metafolin is about $12.40 for 100 tablets of 800mcg from Iherb. If you order enough, which I do, there is another 10% or so discount (varies). Sometimes there are sales with exrtra discounts. How much does the Deplin cost per 15mg tablet? The Folapro is $32.25 for 120 tablets also at IHERB. They also have Douglas labs b-complex with Metafolin now, YIPPIE.

 

[Rosebud Dairy]

I did a cost comparison for myself--

Solgar Metafolin vs. Prescription Deplin

THe prescription was $60 for 30 pills, so $2.00 per pill, and $.13/mg but that is before discounts, and I think I was comparing Amazon prices or Iherb before discounts when I could not find my login info. for iherb.

I was doing the 15 mg. of Deplin alone at first (and the doctor did not know that at that dose it could unmask B12 deficiency), but this was before I remembered the "old thread" of ages ago.

I am now on and Deplin/Solgar combo depending on my foods, whether I am at home or in the car, and other factors --

I am not able to totally avoid folic/folinic foods at this point, so I will probably try Freddd's strategy of pre-dosing my meals with methylfolate (without forgetting magnesium)

It is hard to parse out the precise exacerbations for my IBS. Sugary foods SEEM to set it off, but it was a "healthy" cookie dough that probably had folic acid in it.

Still parsing..........

I did a 15 mg dose of methylfolate AFTER the big 50 mg B12 push (while keeping up my potassium), and I did have considerable brain "brightening" -- clarity?, effervescence? ---maybe just the ability to think clearly, and organize thoughts, do some planning of meals, recipes, laundry-- stuff that is usually SO FLEETING!!! Do we have a clinical term for this brightening effect?

I am noticing an improving/worsening of IBS, and really want to nail it down.

 

[Freddd]

I did a cost comparison for myself--

Solgar Metafolin vs. Prescription Deplin

THe prescription was $60 for 30 pills, so $2.00 per pill, and $.13/mg but that is before discounts, and I think I was comparing Amazon prices or Iherb before discounts when I could not find my login info. for iherb.

I was doing the 15 mg. of Deplin alone at first (and the doctor did not know that at that dose it could unmask B12 deficiency), but this was before I remembered the "old thread" of ages ago.

I am now on and Deplin/Solgar combo depending on my foods, whether I am at home or in the car, and other factors --

I am not able to totally avoid folic/folinic foods at this point, so I will probably try Freddd's strategy of pre-dosing my meals with methylfolate (without forgetting magnesium)

It is hard to parse out the precise exacerbations for my IBS. Sugary foods SEEM to set it off, but it was a "healthy" cookie dough that probably had folic acid in it.

Still parsing..........

I did a 15 mg dose of methylfolate AFTER the big 50 mg B12 push (while keeping up my potassium), and I did have considerable brain "brightening" -- clarity?, effervescence? ---maybe just the ability to think clearly, and organize thoughts, do some planning of meals, recipes, laundry-- stuff that is usually SO FLEETING!!! Do we have a clinical term for this brightening effect?

I am noticing an improving/worsening of IBS, and really want to nail it down.

Hi Rosebud Dairy,

I did a 15 mg dose of methylfolate AFTER the big 50 mg B12 push (while keeping up my potassium), and I did have considerable brain "brightening" -- clarity?, effervescence? ---maybe just the ability to think clearly, and organize thoughts Do we have a clinical term for this brightening effect?



I have called it brightening because it was literally that for me. Visual percption birghtened literally 4x for me. "Dimming" of vision is a b12 deficiency symptom. And it is a very substantial dimming. Also increased clarity of though. These can change from both the CNS dose of mb12 and adb12. Among other things, these are the things I need 30mg injected daily to maintain. It's great to have my mind turn on and be functional. Also l-carnitine fumarate added to it. And SAM-e added to it. And Metafolin added to it. Also with the brightening lifelong depression cleared. It wasn't depressive thinking but rather feeling.

I would suggest the Metafolin dose 1 hour before sublingual dose or same time as SC injection for best effect.


I am noticing an improving/worsening of IBS, and really want to nail it down

For me at least this is one of those key symptoms and patterns. In me it points at paradoxical folate deficiency. I'm preparing an experimental information gathering questionaire that will try to get at these things. Do you have any other symptoms that vary at the same time, such as angular cheilitis (sores at corner of mouth)? Peeling skin around finger nails or finger tips? Inflammatory body pain in muscles and/or joints? Allergy symptoms? Asthma? Bloating? Edema? Nausea? Increased Chemical sensitivity? Cold feet or hands? Anything else that comes and goes on the same schedule more or less. For me the angular cheilitis comes on first followed by IBS and then other things.

 

[Rosebud Dairy]

Do you have any other symptoms that vary at the same time, such as
angular cheilitis (sores at corner of mouth)?
Peeling skin around finger nails or finger tips? Possibly
Inflammatory body pain in muscles and/or joints? I think so
Allergy symptoms? I think so, THe most recent bout of IBS was accompanied by the sniffles - A family member who knows me quite well said I sounded stopped up over the phone. I couldn't tell.
Asthma? I think so. More coughing at 4:30 in the morning that wakes me up
Bloating? Edema? Yes!! I had bloating from Christmas to New Years until a couple of days ago. Then I dropped five pounds in two days of what i attribute to carbs/regular table salt. My attributions clearly could be wrong
Nausea? When I was having muscle spasms, I was also have terrible nausea in the evening --low potassium?
Increased Chemical sensitivity? This has varied, but I thought according to hormonal shifts. I would love to be wrong.
Migraines (hormonal shifts)? I felt a migraine coming on, but was also cracking down on my potassium, and it improved.
Cold feet or hands? Definitely cold feet only in the evenings, but with improved circulation noted.
The most recent bout of IBS came with edema, joint pain, 4 day post exertional muscle pain (here, low VIP, I always said)
4:30 am insomnia came BEFORE the bout of IBS
It never occurred to me to see if theses are all on the same schedule, but I will be looking
Again, I thought the IBS was from sugary foods, but maybe the fortified folics are getting to me.

I dosed 4 Solgar methylfolate 800's sublingually BEFORE a salad containing fresh greenery, and will wait to see what the morrow brings. Also had cake and ice cream

Anything else that comes and goes on the same schedule more or less. For me the angular cheilitis comes on first followed by IBS and then other things.

 

[Freddd]

Would anybody here who has confirmed some form of folate deficiency by a Metafolin trial of any length, please go to this thread, http://forums.phoenixrising.me/show...CIENCIES-PLEASE-POST-HERE&p=232724#post232724 and post the requested information. Thankyou