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Could it be folate?

richvank

Senior Member
Messages
2,732
I read Scott Forsgren's blog & found the connection to gliadin interesting. But what does the acronym MSH stand for? Multiple Chemical Sensitivity? I need help with umpteen other acronyms in the blog also.

http://betterhealthguy.com/joomla/blog/251-biotoxin-illness-conference-2011

Thanks!

Hi, Gloria.

MSH stands for melanocyte stimulating hormone. It is a hormone that is produced by the pituitary gland. It does stimulate formation of melanin in the skin, but Dr. Shoemaker finds that it does other important things, too.

Best regards,

Rich
 
Messages
94
Location
California
anypne with histamine issues should be very careful with folates. I think folinic acid is tolerated best in such cases.

Hi Joopiter76,
I just wanted to say that my histamine issues improved greatly after finally getting my methylfolate up to a higher level. While working on the low and slow approach, I constantly battled histamine. I am now up to 1600 mcg metafolin per day, and histamine problems haven't surfaced at all since this increase. It's amazing how different all of our bodies work!
 

Rosebud Dairy

Senior Member
Messages
167
Patient had a "crash" this week after running out of methylcobalamin. Patient also stopped taking methylfolate (to avoid folate trap?) and had a couple of non-functioning days this week with pain, stomach problems, etc.

Patient is working Shoemaker protocol, but is the first patient of the doctor to get to the VIP step. Some blood labs might need to be repeated. The water damage was fixed. ERMI/HERTSMI-2 scores look good, but might need to some different sampling procedures to get a more accurate picture of recent settled dust.

Patient's and patient's children have all been passing around a fever with sinus and or ear infections since October. One doctor hypothesized that it could be mycoplasma repeatedly being passed around the family.

Once child has a VERY persistent case of Postconcussive Syndrome, and most of patient's time since August has been taken up with his case management. Patient will probably get MTHFR testing done for the PCS child, along with cytokine profiles (IL-1, IL-6, IL-8, and TNF) perhaps also MMP-9 and IGF-1 or TGF beta. Patient is having physical therapy for PCS child for neck strengthening, and perhaps hyperbaric oxygen therapy to lower cytokines.

Patient continues to question MTHFR connection to concussion, but most doctors are dismissive of any possible connection. Shoemaker would say, "Look at cytokines and inflammation." Yasko would say, "Buy my vitamins!" --Just guessing at that one.

Patient seeks to find biomarkers for PCS that can possibly be monitored by urine output, so as not to put the child through repeated bloodwork. Yasko's urine amino acid markers may have potential here, but patient struggles with understanding biochemistry.

MTHFR, clotting, depression, heart issues, thyroid issues, post concussive syndrome, and HLA/mold susceptibility -- all associated? Who would know these answers?
 

Rosebud Dairy

Senior Member
Messages
167
MTHFR, etc.

"Normal heartbeat" -- Meaning what exactly?

Patient has one of the QT syndromes (Patient doesn't remember which one!)

Patient has had a sluggish heartbeat -- looks like a slow "athletic" heartbeat


Thanks again!

Trying to keep it clinical here -- as I know this information, presented clinically, could possibly assist many others.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
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!

Hi PhoenX,

I current take 12,800+ mcg of Metafolin a day. I have paradoxical folate deficiency from vegetable food souce folate. I don't eat entiched white flour products but lots of veggies have way too much natural folate (folinic acid) for me to eat comfortably if I eat too much. I can have one to two modest veggie servings a day without problems at this dose. I have to take metafolin in this pattern to work. 1600-2400mcg per meal, just before the meal to absorb BEFORE the veggie folate. Then I have to take 3200 mch at wakeup hours before food, 3200mcg at bedtime and 1600-3200mcg at my midday injection time.
 

Rosebud Dairy

Senior Member
Messages
167
Having a known single C677T, but not having any of the other 50 or tested, I am still wondering about leaving out folic and folinic acids completely. Some friends assert that one can get all of ones folinic acid needs from diet alone!

This patient has not had auto antibodies for folate checked, and has had marked improvement on just the basics.

Patient still has some loose ends to tie up on the Vasoactive Intestinal Peptide. Apparently has to get a repeat ERMI.

Patient is eager to try the VIP, but going through the proper hoops first.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Having a known single C677T, but not having any of the other 50 or tested, I am still wondering about leaving out folic and folinic acids completely. Some friends assert that one can get all of ones folinic acid needs from diet alone!

This patient has not had auto antibodies for folate checked, and has had marked improvement on just the basics.

Patient still has some loose ends to tie up on the Vasoactive Intestinal Peptide. Apparently has to get a repeat ERMI.

Patient is eager to try the VIP, but going through the proper hoops first.

Hi Rosebud

Some people, unknow percentage but it includes me, can't utilize folinic acid or vegetable source food folate causing paradoxical folate deficiency. The more folate containg veggies I eat the worse the deficiency gets. Vegetable food source folate is mostly folinic acid. Folinic acid in sufficient quantity completely blocks ANY quantity of methylfoalte I have tested so far.
 

topaz

Senior Member
Messages
149
I would take the most bio-avail form of folate, especially given that you are dealing with a single defect which reduces the persons ability to utilise 5-methyltetrahydrofolic acid, not as much as a double defect but still around the 50+% mark. Either Dr Smith in your video above or Dr Rawlins in his youtube lecture (a 4-part series) addresses this issue (of diet alone not providing sufficient in the presence of even a single defect, let alone a double.

What is the harm in trying 5-methyltetrahydrofolic instead of finding that you are a member of the population in which folic/folinic acid induces a pradoxical folate deficiency down the track?

Clinical experience led both Rich Vank and Freddd to switch to Metafolin and eliminate the other down-stream forms in early 2011. For methylation, 5-methyltetrahydrofolic acid is now the "standard" as thinking has accelerated somewhat through the second half of 2011 (good to see that Freddd and Rich Vank were well ahead of the curve!).

Dosage of course remains an issue as Solgar is 800mcg and Deplin comes in 7.5 or 15g but its just a case of trial and error. Personally, I would start at the equivalent of half a 7.5g Deplin ie around 4 x Solgar 800mcg and take it from there.

Id be very interested in what the methyl-meisters think!
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Patient had a "crash" this week after running out of methylcobalamin. Patient also stopped taking methylfolate (to avoid folate trap?) and had a couple of non-functioning days this week with pain, stomach problems, etc.

Patient is working Shoemaker protocol, but is the first patient of the doctor to get to the VIP step. Some blood labs might need to be repeated. The water damage was fixed. ERMI/HERTSMI-2 scores look good, but might need to some different sampling procedures to get a more accurate picture of recent settled dust.

Patient's and patient's children have all been passing around a fever with sinus and or ear infections since October. One doctor hypothesized that it could be mycoplasma repeatedly being passed around the family.

Once child has a VERY persistent case of Postconcussive Syndrome, and most of patient's time since August has been taken up with his case management. Patient will probably get MTHFR testing done for the PCS child, along with cytokine profiles (IL-1, IL-6, IL-8, and TNF) perhaps also MMP-9 and IGF-1 or TGF beta. Patient is having physical therapy for PCS child for neck strengthening, and perhaps hyperbaric oxygen therapy to lower cytokines.

Patient continues to question MTHFR connection to concussion, but most doctors are dismissive of any possible connection. Shoemaker would say, "Look at cytokines and inflammation." Yasko would say, "Buy my vitamins!" --Just guessing at that one.

Patient seeks to find biomarkers for PCS that can possibly be monitored by urine output, so as not to put the child through repeated bloodwork. Yasko's urine amino acid markers may have potential here, but patient struggles with understanding biochemistry.

MTHFR, clotting, depression, heart issues, thyroid issues, post concussive syndrome, and HLA/mold susceptibility -- all associated? Who would know these answers?

Hi Rosebud,

Metyhyltrap is caused by lack of active mb12, not methylfolate. Also NAC, glutathione, un-denatured whey and a few other items cause the methyl trap.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Effect of 18x800mcg methylfolate on someone with the genes seen in my footer while exposed to an androgen receptor blocker (DHEA blocker) (a flea control product):

Starting at 6 pills (but not 5) I began to experience improved neural perfusion. Going from 6 to 12 pills increased the perfusion somewhat but there were diminished returns going from 12 to 18 pills. (I think 6-7 pills at a time gains the maximal perfusion obtainable by this substance for me). The increased perfusion felt like an effervescence, as if Vicks Vaporub had been applied, and also soothed neural tension and knots, adding peace to areas of the brain. However it did not overcome what feels like radical oxygen species caused in some way by the flea control product. In other words, the headache and swelling moved around, was lessened and eased in places, but not dispersed. So the upper headache became earaches and a lower headache. The inflammation feels like someone taking a piece of sandpaper to the brain (but it is not a belt sander as with hyperthyroid, so its a low level abraided feeling).

The effervescence indicates to me that this is part of the solution. But the methylfolate by itself didnt work. I remembered some comment about having to take a lot of mB12 with it (and certainly Freddd does since he gives himself injections) so I took two mB12 sublinguals (Jarrow).

It made no difference. But I noticed a few things one that my back felt like it was going to break, my chest got tight, and my whole body was taken over by tension (a clear sign of deficient alkaline minerals something I often feel from hypoglycemia). I remembered Freddd saying it is important to take extra potassium with this so I too 500mg potassium, 300mg calcium itrate, and 300mg magnesium. It took away most of the tension, the worst of it, but not all. I could have taken a bit more. I also took 1 Thorne Basic B becauseI decided these nutrients cant work in a vacuum.

I also noticed my wrist got REALLY weak and painful. This is something my cousin and I identified a few years ago as osteoarthritis and a sign of insufficient SAMe (according to Life Extension). I decided to heck with this experiment, this is about me feeling good, so I took 1g. TMG. That fixed the wrist promptly. Does this mean the only way I could get methylation is via the BHMT/TMG path? It seemed to me that the extra folate, while giving me brain perfusion, all the same acted like a vortex sucking down methyls instead of generating them (afterall, I did not have the wrist symptoms before I took the mfolate).

I also notice I have tinnitus. I never had that before I went hyperthyroid last year. I associate it with radical oxygen species in the brain. I probably had tinnitus all day and was just tuning it out until I started this experiment. But not sure.

I next noticed I started feeling slightly like I was catching a cold (sinus impairment) which indicates a zinc deficiency as zinc averts colds. I remember Freddd going on and on about zinc and how it is needed in this protocol and anyway I always take zinc for colds. So I took 30mg zinc. This averted the cold, but I woke up with a zit (which for me also indicates a zinc shortage) so I am thinking 30mg was not enough zinc. Something about this protocol may raise zinc requirements or it could have been coincidence.

I no longer feel like I cant stand to be touched, but cannot say if that is due to the nutrients or just attenuation from flea product exposure.

So, end result, it does not work for me while exposed to a flea control product but it is promising. It seemed to me that there is a balance between all these supplements that is not easy to find.

Hi Ryda,

Taking the larger doses of methylfoalte appears to penetrate the CNS. I am going to try the larger at one time dose today to ssee if that helps my folate problems. For a dose of mb12 that penetrates the CSF/CNS try 50mg of Jarrow mb12 in 3 hours, starting with 4 tablets, adding 3 more after 45 minutes and 3 more after the next 30 minurtes and reatain until done, as long as possible. This will give you a similar experience to injecting SC 7.5mg to 12.5mg of 5 star mb12 in penetrating the CNS/CSF. It also works separately with separate effects for adb12.
 

Rosebud Dairy

Senior Member
Messages
167
Thank you Freddd and Rydra.

I will try the mb12 push, as I still have some twitching that came back, a bit of fatigue, and some lingering brain fog.

HOWEVER.....
I started to catch a cold, and didn't. This is VERY unusual as of late.
My diet is almost back to normal, and I might be able to drop the 4 mg of immodium soon
I can make it through a "normal" day without a midday crash.
I can tolerate being touched by my children--before I just didn't want to hug them or even offer any solace. almost what I have read as described as autistic type symptoms.

I don't want to tell them to hush if they want to talk to me.
I don't drift off into lala land when those conversations with children take place.
I am talking more to more people more often more on a voluntary basis ---- a huge change.
I am ME.

I am very afraid of zinc, as I crashed from it BEFORE I started back on the Rich/Freddd protocol. Now I am weaned off of hydrocortisone, I might be able to do some smaller doses.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
I should also mention that Life Extension wrote up a huge spread on something very radical their doctors noticed...they found that ALL THEIR PATIENTS HAD TO DO to have normal blood pressure was AVOID ALL WHEAT. (I did wonder what sort of folate was in wheat). Is there any way to get ahold of non-folic-acid fortified wheat products? Do you know if it is added to the wheat or to the baked goods? In other words, if we buy bread makers and make our own bread, will it have folic acid in it from the wheat we buy?

I had heard that the practice of adding folates to bread products has saved many lives, however hard it makes life for me. Sigh

Thanks for the informative post!
Rydra
This is also very interesting.

Hi Rydra,

Whole wheat bread has folate in it, presumably folinic acid which gives me a larger problem than folic acid in fortified white flour. One slice of 1 ounce has 30mcg or so of folate. It's rarely one thing. So if I have some steak (5 oz), onions, a large salad without dressing, some winter squash and some chard all at one meal I will have folate deficiency triggered. A piece of bread would be the least of it.

Adding folic acid to white flour reduced incidence of neural tube defects (spina bifida) 27%, a "disappointing" amount compared to what they expected. I would suggest that there was more gain offset by induced cases of neural tube defects that would not have happened without the folic acid.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
How do glutathione and cysteine cause a methyl trap?

Hi Valentijn,

Rich is the knowledgable one about the ins and outs of the biochemistry. I described my symptoms and what happened in detail and he gave me a hypothesis that fit the occurances. They are easily and unpleasantly repeateable with 100% predictable response. It uses ALL the data and doesn't have to leave anything out. So we have several things, glutathione, NAC, un-denatured whey, MAXGXL, and some other precursors that all increase glutathione. This does confirm that taking percursors does indeed increase glutathione. The glutathione, in overwhelming quantity compared to a few mg of b12 combines with the free mb12 and adb12 in the body and it rapidly is flushed out by the kidneys. If a person is taking enough b12 there is a huge increase in the visible b12 in the urine very rapidly. That b12 which is left in the body after the flush is glutathionylcobalamin which is inactive, appears to not convert to an active form rapidly enough to be useful. Then the methylfolate in the cell has no active b12 to work with and is flushed from the cell. This is the "methyl trap". This would produce a higher folate serum level (hypothesis) and a low cellular level where it is actually used. This produces immediate folate deficiency symptoms of great severity in many cases and a slower onset of adb12 and mb12 deficiencies if continued for weeks and months. It is relieved with a large dose of Metafolin and repeat doses and takes progressive effect over a fgew days as the glutathione is flushed from the body. Larger doses of mb12/adb12 help restore a functional level of active b12.

The "methyl trap" was first hyypothesized in the 1960s and is well descrbed by now. It's just that nobody attached it to glutathione as a cause before.

If a person already has all these deficiency symptoms when they start the glutathione (precursors) they may feel better in some ways and the deficiency symptoms remain unchanged or worsen a little slowly. If they have had great success at reversing these symptoms in the first place then the glutathione hits like a ton of bricks as the get a return of their previous sysmptoms (the way it is often described).
 

Rosebud Dairy

Senior Member
Messages
167
Just did an mb12 push as described by Freddd above.

I had run out of mb12 a few weeks back.

The push did reduce some muscle spasmy pain that was starting in the shoulders. I did not have any twitching after the push, now about two hours.

The brain still feels a little foggy, but brighter than before.

Now it is time for a banana
 

Adster

Senior Member
Messages
600
Location
Australia
Freddd, it's possible that you could still enjoy folate containing veg if you just cook it for ages, if you are missing eating those veg. Cooking for long enough appears to destroy plant folates.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Freddd, it's possible that you could still enjoy folate containing veg if you just cook it for ages, if you are missing eating those veg. Cooking for long enough appears to destroy plant folates.

Hi Adster,
I'd rather have nicely cooked veggies and fewer of them than severely overcooked ones. I'm still experimenting with timing and how much of what I can eat.
 

Rosebud Dairy

Senior Member
Messages
167
Speculating here.........

Would a 15 mg dose of metafolin (methylfolate, of course) be considered a "push" (ultra larger dose) as the 50 mg "push" of mb12 is?

Theoretically, I am thinking for my weight (64.5 kg), four bananas should cover me if I decide to go over 15 mg of methylfolate in one day.

Also, epsom salts will be added to the bath in the evening -- 1 - 2 cups to cover my magnesium.

Mineral supplements tend to flare my IBS, so I go with food or transdermal usually.
 

Rosebud Dairy

Senior Member
Messages
167
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.