Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

Methylfolate moderates stocking-glove numbness, as methylcobalamin previously did

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by ChetRoi, Dec 29, 2014.

  1. ChetRoi

    ChetRoi

    Messages:
    27
    Likes:
    26
    Florida West Coast, USA
    I posted several months ago seeking assistance on an idiopathic symmetric sensorimotor stocking-glove axonal polyneuropathy. I’m 67; numbness started in feet four years ago. Over the years proprioception probs, ataxia, positive Romberg, leg weakness but no pain, slowly advancing numbness, thermal sensitivity compromised.

    In Feb 2014, stopped CB-12 (B-12 deficiency discovered years earlier) and started MB-12 @ 5mg Kirkland. Dramatic results by the next day with improved walking, much less burning in calves. Continued improvement over 3 ½ months, numbness-free except for feet. I had my real legs back. Stability much improved. Able to tandem walk. Chronic neurotransmitter problems (depression, combat PTSD) began clearing. Was able to walk down all psych Meds over ensuing two month period. MB-12 increased. Methylfolate added to the mix.

    In June 2014, numbness creeping back and more frequently quantum advancements, sometime moving inches up legs overnight, reaching waist, and forearms. But numbness would usually retreat unexpectedly after days or a week or so.

    A recommendation from @Freddd (thanks!) during one of the numbness surges was a three-day regimen of LCF/MB-12/MB-9, AB-12, LCF/MB-12/MB-9 which stopped the sporadic rapidly advancing numbness. However, Subsequently, I was not reliably able to halt the fast-moving numbness each time.

    Until now. I have found a clear cause and effect relationship that I did not expect. Taking my blood glucose numbers, I learned that the higher glucose reading (for me, approx 110-135 five hrs after eating) absolutely predicted sudden advancement of numbness within a day. Correspondingly, lower glucose numbers (80s) would indicate no discernible numbness increase.

    Subclinical diabetes you say? Current neuro says No, and “no clinician will prescribe (diabetes) Meds” with my numbers (typically 90-95, A1C 5.5). EMG/NCVs have been variously interpreted as possibly diabetes, certainly not diabetes.

    Recently, a new symptom: vision fuzziness and shimmery, wavy lines in part of left eye. Optho guy says more indicative of MS than diabetes but an LP two years ago showed no oglio bands.

    Further, I have learned that I can affect the advancing numbness (but with less precision than sugarless diet) with larger doses of methylfolate alone. A shot of MB-9 after a high glucose reading will usually bring the number (and numbness) down within 12-18 hours, otherwise high for a couple of days.

    My current thinking is that this is a cellular Sorbitol buildup in the glucose processing pathway but I wanted to get experienced eyes on this, especially considering the new data on the blood glucose/numbness relationship.
     
    melamine, dannybex and Victronix like this.
  2. Victronix

    Victronix Senior Member

    Messages:
    362
    Likes:
    133
    California
    Just wanted to mention that when I once had a very bizarre shimmering on one side in one eye, affecting my vision, that lasted on and off for a couple of hours, it was interpreted as part of a migraine. I had been having chocolate and red wine and migraines run in my family, but I'd never had that before or since.
     
  3. PennyIA

    PennyIA Senior Member

    Messages:
    719
    Likes:
    1,663
    Iowa
    Very educational information that I'm planning to sit on and study up... I had gestational diabetes at one time and get regularly screened for it since I'm at high risk of developing it for long-term... but docs say - that I don't have it now.

    I've had a LOT of the symptoms you've described... like a LOT of them. And I went for a long time with little to no help from doctors other than them saying it looks like MS, but isn't MS and they would throw their hands up in the air.

    Because you found a lot of relief switching from CB12 - MB12 - I'm wondering if you might have some similar genetic defects that I have... and as such I wonder if your B6 levels have ever been tested? I was b6 toxic and once it finally 'cleared' my system - the stocking glove, numbness, thermal sensitivity, vision fuzziness including the shimmering, ... as well as vertigo that I was suffering from have all receded. Unfortunately, I still have issues with the burning calves and leg weakness.

    It took a REALLY long time for me to get testing for B6 levels as the doctors swore to me it was impossible to become toxic on the dose I was taking. But both my mother, myself and others online have found that there must be something that causes some individuals to become toxic even when we don't take it as a stand alone supplement and take exceptionally small doses. I have nothing to back me up without thorough research that no one is funding - but I believe it's part of the methylation pathways defects and I'd be curious to see how that ties with what you've learned about glucose.

    ETA: and B6 is one of those supplements that are often hidden in other things - so you won't always be aware that you are taking them. I'm still researching to see if I might be getting some through a hidden source.

    I wonder if someone with more scientific understanding of the B6 processing pathways would be able to understand how glucose impacts it.
     
    Last edited: Dec 29, 2014
    melamine and Victronix like this.
  4. ChetRoi

    ChetRoi

    Messages:
    27
    Likes:
    26
    Florida West Coast, USA
    Yes. This effect is sometime referred to as a painless migrane.
     
  5. Victronix

    Victronix Senior Member

    Messages:
    362
    Likes:
    133
    California
    @PennyIA I also became B6 toxic and paid for the lab test myself -- was at the top of the range several days after I figured it out and totally stopped it. My lower legs were having burning and numbness and muscle spasms and have never been fully recovered since. I also got panic attacks, but those did not come back, thankfully. Yes, I discovered that things like Izzy sodas sometimes have B6 added, and various teas and other things.
     
  6. Freddd

    Freddd Senior Member

    Messages:
    4,941
    Likes:
    1,476
    Salt Lake City
    Hi ChetRoi,

    In my tests I found the Kirkland to be 4 stars, more or less. For me it was incapable of maintaining CNS neurological healing. When I had to be disabled by inability to focus my eyes and read, my wife read to me The Hobbit, and all 3 rings books. It took 5 star MeCbl to reverse that. The numbness that was due to CNS needed CNS penetrating doses of MeCbl and AdoCbl. The peripheral neuropathy just needed a good 5 star MeCbl at 1mg sublingual for 45-120 minutes.

    I found that I had a bunch of time based cycles. When I was taking testosterone on the 14 day cycle, I had one of those. When on a 10 day injection cycle I had that. At an injection each 7 days, no cycle. B-complex once a day made a 24 hour cycle of pain and heart arrhythmias. Twice a day b-complex, it went away. Too much B1, B2 and/or B3 all made the PFD worse. I found half a dozen such cycles through the years. What remains is one cycle I have had all my life. It is a two week paradoxical folate deficiency cycle. As I have eliminated folic acid, folinic acid, increased methylfolate etc, it has gotten milder, but still remains. I had it as a kid. I would swell up with water, start pissing it out, get low potassium spasms waking up screaming in the middle of the night. Then I would be fine for a week and then the edema started all over again. I had lots of other symptoms overlaid on it through the years, like headaches, ED, neuropathic numbness, neuropathic bladder and pain. At this point I haven't a clue what is causing it but it is still there, a mere shadow of it's former self.

    Have you tried Benfotiamine? It can be helpful with sugar related neuropathic problems. However, too much can overdrive the need for methylfolate and potassium. 10-20mg a day might do wonders. This is something that needs titration for the individual. These vitamins have an inverted U shaped effectiveness by dose. There is an optimum and they go down on both sides of that. These vitamins are all generally much more effective with MeCbl and methylfolate than with HyCbl and any folate or folic acid with any cobalamin. High gamma E 8 factor, and chromium GTF might make a difference. Tracking blood sugar multiple times per day for a few months with all the other symptoms might give you the clues you need.
     
  7. Critterina

    Critterina Senior Member

    Messages:
    1,202
    Likes:
    700
    Arizona, USA
    Yep, it sounds like an "ocular migraine" but for me it happened with the same pattern in both eyes. If it happens again, notice any nausea, sensitivity to light, or other symptoms that may be just on the verge of your perception (while part of your brain is screaming "why can't I see???") It's definitely worth consulting your optometrist, opthalmologist, neurologist, or whoever you see next.

    If it happens again, you might seek medical help immediately. I went to Urgent Care (it had resolved by then) and they sent me to emergency so that an MRI (and they were particular that it shouldn't be a CT scan) could rule out a tumor, stroke, or brain bleed.
     
  8. PennyIA

    PennyIA Senior Member

    Messages:
    719
    Likes:
    1,663
    Iowa
    I experienced similar effects - recurrent on again/off again while b6 toxic. They did screen me for everything and multiple MRI's and I was examined by the head of the opthamology department and nuerology department at Mayo - they came to no conclusions. Regular Nuerologist deemed it migraine aura... but I had them coming and going for several years without any headache of any kind - like ever. While I am aware that some migraine auras can occur without head pain, recurrent ones usually come with headaches. The vision issues resolved when I stopped taking b6.
     
    Victronix likes this.
  9. ChetRoi

    ChetRoi

    Messages:
    27
    Likes:
    26
    Florida West Coast, USA

    I do have many of the SNPs you have listed, most notably MTHFR A1298C, MTRR A66G, BHMTs, and others. Yes, I've had tests for B6, as-well-as B1/2/9/12. All were OK except for elevated folate. For me the burning calves were very clearly a B-12 problem. They would burn on the first turn of my Recombent trike pedals. One day after MB-12 the burning was gone and I had renewed leg strength.

    You are not alone with the B6 toxicity; I've had more than one neurologist caution me against using it at all. Obviously, they see a good bit of B-6 neuropathy.

    I'll post more on the glucose-numbness relationship as I learn or hear of it. Good luck.
     
  10. Critterina

    Critterina Senior Member

    Messages:
    1,202
    Likes:
    700
    Arizona, USA
    Hi Penny,

    Most of my migraines are painless. For a while I didn't even really know they were migraines if there was no vision loss, except that they respond to migraine meds. My other symptoms are that it takes 10x the normal effort to listen and speak, and I can't make mental maps of an area, even a rectangular office building with a hall down the center.

    My most common migraine trigger is air travel, car rental, and starting a new assignment, always if I'm in the DC area and sometimes in other locations. Next trip I've arranged to get a rental car without air freshener. I'm hoping have nailed my migraine trigger. Nine years of going to DC and changing everything but my rental car company didn't work. I've even traveled a day early to give me time to get over it. If they can't get me a scentless car, I'll rent from someone else.

    But funny that you were b6 toxic and I was b6 deficient. Not that adding b6 has helped the migraines, but it has helped overall.
     
  11. PennyIA

    PennyIA Senior Member

    Messages:
    719
    Likes:
    1,663
    Iowa
    Interesting things migraines... I did have like five of them in my lifetime... so thankfully - quite spread out. And never with any visual disturbances. Just the usual massive head pain, scents/sounds/light sensitivities. The first few just took laying in a dark, quite room for a while. The last one lasted a week and came about as a negative reaction to a new anti-depressant my doctor insisted I try ... even though I'm not depressed (but you know how they go on about not believing it's really me/cfs)... but after I nearly killed myself in the bath tub fainting from sudden, severe blood pressure drop while on it and then having a migraine for a solid week - he did agree that perhaps his attempts to cure me of the depression that I didn't really have might not have been a good idea and unworthy of further attempts. So, at least he's stopped pushing anti-depressants at me.
     
    Gondwanaland likes this.
  12. Victronix

    Victronix Senior Member

    Messages:
    362
    Likes:
    133
    California
    That's quite a price to pay to address a doctor's pressuring on antidepressants -- sorry to hear you had to go through that. I had a complicated gut issue going on for years but luckily I happened to see a UCSF GI med student during a procedure who told me, "Don't let them put you on antidepressants if they can't figure it out -- antidepressants will make you not care as much about the problem, but they won't solve the problem. You have to first solve the problem."

    I later did find that I had very low serotonin -- to be expected with long term gut issues -- but that was easily addressed with 5-HTP, a natural precursor for it. And stopping gluten, sugar, etc., has made a big impact on my gut problems.

    One person I know who was on anti-depressants developed a rash to her own sweat, and so stopped exercising . . . the worst thing you can do for almost anything. It took a long time to figure out what it was, and by then, she'd gained a lot of weight.
     
  13. dannybex

    dannybex Senior Member

    Messages:
    3,204
    Likes:
    2,199
    Seattle
    But sounds like at least 'pre-diabetes' or metabolic syndrome, or possibly insulin resistance? I'm discovering the same thing in my own case. My A1c is also 5.5, and I've also been having quite severe issues with my eyes for the last 7-8 months or so.

    That is really interesting that the folate lowers your glucose readings @ChetRoi. Really, really interesting. I'm curious if you've found that taking 'too much' folate causes your glucose to drop too far?

    Also, have you looked into thiamine injections or benfotiamine for the blood sugar-related neuropathy? Might help as well. Or chromium to help regulate/stabilize glucose levels?
     
  14. Freddd

    Freddd Senior Member

    Messages:
    4,941
    Likes:
    1,476
    Salt Lake City

    Hi Dannybex,

    During the last going down year before I started MeCbl I had visual problems. I had unfocused double vision in each eye. It was on some days and not others. However, my wife was able to read me all of Hobbit and Lord of the Rings. It was a major factor in not even being able to continue software. There were years I could consult or do software and worse years I couldn't do anything. However, as soon as I started the Enzymatic Therapy MeCbl the problem never has come back in the past going on 12 years. I don't know if it was the nerves or the control muscles or both or something else. On my various layers of healing there were a variety of MeCbl and/or Metafolin doses needed. B1 can cut down on the effectiveness of methylfolate by requiring more of it and doing less. Much less B1 works more strongly with MeCbl and methylfolate. The Japanese high dose MeCbl trials indicated that neuropathies of various causes were helped. In the intrathecal 2.5mg MeCbl injection trial in folks with diabetic neuropathy it helped them as long as the levels remained high. In the diabetic group that has been from under 3 months to over 4 years (still being tracked).

    CFS/CNS patients are shown low in cobalamin and many with raised Hcy and/or MMA in the CSF in a variety of research. It is hypothesized that either it exits too quickly and/or enters too slowly the CSF.
     
    dannybex likes this.
  15. dannybex

    dannybex Senior Member

    Messages:
    3,204
    Likes:
    2,199
    Seattle
    I understand Fred, and yes, have heard that high-dose thiamine can deplete folate (and other b vits). I was just bringing up thiamine (and chromium) as they both are involved w/glucose metabolism issues.

    http://www.ncbi.nlm.nih.gov/pubmed/23715873
     
  16. Gondwanaland

    Gondwanaland Senior Member

    Messages:
    4,627
    Likes:
    3,603
    The other way around is also true
     
    dannybex likes this.
  17. Freddd

    Freddd Senior Member

    Messages:
    4,941
    Likes:
    1,476
    Salt Lake City
    What are the symptoms as it starts and then as it gets worse? What is to be recognized as indicative of that?
     
  18. Gondwanaland

    Gondwanaland Senior Member

    Messages:
    4,627
    Likes:
    3,603
    My experience: http://forums.phoenixrising.me/inde...d-silymarin-interaction-b1-defficiency.29321/

    And low potassium is linked to low B1 in beriberi disease. There is a close interaction between them (+ magnesium) that my cognitive impairment and brain fog prevents me to explain further today, sorry. Just had a migraine day after 1.5 years migraine-free.
     
  19. dannybex

    dannybex Senior Member

    Messages:
    3,204
    Likes:
    2,199
    Seattle
    @Freddd

    Here's a good list re thiamine deficiency, and a cut-and-paste from an article a few years ago:

    Physical Symptoms of Low Vitamin B-1:


    * Beriberi (translated: “I cannot, I cannot.”)

    * Constipation

    * Headaches

    * Hyperactivity

    * Indigestion

    * Loss of appetite

    * Changes in heartbeat and pulse rate

    * Nausea

    * Double vision

    * Muscle aches and weakness, cramps

    * Physical tension

    * Stomach disturbances

    * Abnormal nerve and brain function

    * Causes secretions of hydrochloric acid (stomach acid) to become abnormal. (LOW)

    * Fatigue

    * Weight loss

    * Retarded growth

    * Slow heartbeat


    Psychological Symptoms of Low Vitamin B-1:


    * Aggression

    * Anorexia

    * Anxiety

    * Apathy

    * Confusion

    * Depression

    * Emotional instability

    * Fear

    * Forgetfulness

    * Insomnia

    * Inability to concentrate

    * Nervous disorders

    * Irritability

    * Memory loss

    * Restlessness

    * Sensitivity to noise

    * Mental hyperactivity


    About half of the body stores of thiamin are found in skeletal muscles, with the remainder dispersed throughout the heart, liver, kidneys, and nervous tissues, including the brain. It takes only three weeks of a total dietary lack of thiamin to see the first signs of deficiency.


    Thiamin's enzyme helper is "thiamin pyrophosphate," (TPP) needed to break down glucose, fats and carbohydrates vital for energy production. Thiamin promotes a normal appetite; aids in digestion; helps fight off motion sickness; keeps the nervous system, muscles and heart functioning normally; improves mental attitude; and has proven effective in the treatment of lead toxicity.


    Severe thiamin deficiency, known as beriberi (see Glossary), is common among those who rely on staples of white flour and white rice. Milling removes husks which contain most of this vitamin, but boiling before husking disperses it throughout the grain -- a process known as "converted rice." Commercially, thiamin might be listed as "thiamine hydrochloride" or "thiamin mononitrate."


    Dr. Derek Lonsdale, a colleague of mine, has advanced the theory that certain people with neurological symptoms may have unrecognized borderline vitamin B1 deficiencies. Lonsdale worked especially with children who had autonomic nervous system dysfunction -- not specifically panic syndrome, but a syndrome of drastic swings between lethargy and hyperexcitability -- and found that thiamine often helped stabilize them. Interestingly, it's been shown that vitamin B1 is necessary for the metabolism of sugar.


    Deficiencies can be classified within three reasons: 1) the body requires more than normal as in cases of hyperthyroidism, pregnancy, lactation, and fever; 2) there is impaired absorption caused by prolonged diarrhea or lack of necessary enzymes, for example; and 3) there is impaired utilization brought on by severe liver impairment or other disorders.


    Deficiency symptoms include: brain deterioration, decreased memory, depression, emotional agitation and deterioration, decreased vision, inflammation of the optic nerve, CNS and reflex deterioration, increased pyruvic acid in the blood, tingling or burning of feet, decreased sense of touch, fatigue, decreased appetite and digestion, constipation, decreased immunity, decreased protein synthesis, abdominal and chest pains, cardiac deterioration, decreased blood pressure, varicose veins, bluish skin color, labored breathing, tender leg muscles, decreased resistance to cancers.


    Early signs include fatigue, irritability, sensitivity to noise, memory loss, inability to concentrate, fatigue, sleep disturbances, precordial pain (area above the heart), appetite loss, abdominal discomfort, and constipation. Symptoms of moderate deficiency include fatigue, apathy, nausea, irritability, depression, slow wound healing, loss of appetite, indigestion, constipation. Other symptoms attributed to a thiamin deficiency include: irregular heart beat, SOB (shortness of breath), low blood pressure, chest and abdominal pain, kidney failure, heart failure, and death. Thiamin has proven to correct all these symptoms -- with the exception of the last one.
     
  20. Freddd

    Freddd Senior Member

    Messages:
    4,941
    Likes:
    1,476
    Salt Lake City
    Thank you. So most of the symptoms are indistinguishable as they overlap considerably with Folate/b12 deficiency symptoms. However, varicose veins and bluish skin color don't match up, especially coloration which has a different tint for B12 deficiency. Does that include hemorrhoids too? On nervous disorders for instance can that be made more specific?

    And of course Beriberi was the final diagnosable state of deficiency leading to death. One of the blessings of the roller mill making perfectly life free white flour.
     
    Last edited: Jan 19, 2015

See more popular forum discussions.

Share This Page