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Cognitive symptoms worrying me.

Discussion in 'Cognition' started by Lyme_Paramedic, Jul 18, 2016.

  1. Lyme_Paramedic

    Lyme_Paramedic

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    Hello

    I am new to this disease process and could use some experienced advice

    I am worried and could use some peace of mind

    I just had my 23 and me test which came back with BOTH COMT GENES that are completely mutated. A few mtfhr genes with single mutations.


    I am at this road because of Lymes disease. I am now enduring the aftermath of chronic Lyme:

    My doctor wants me on methyfolate and methylb12. I am also taking milk thistle, Green tea extract, high end fish oils gluten free diet, and turmeric.

    I recently was Getting though for a while before this diagnoses but on the 4th of July there was no gluten free stuff to eat so i thought Eating pizza wouldn't be to bad. I had a headache the next day so I took some Motrin and 5000 mcg. Methylb12 and instantly got fatigued but that was it. I stopped the b12

    3 days later it started as brain fog not to bad then progressed with significant cognitive impairment. Short term memory loss ( big time), out of it, can't read very well, word reversal, difficulty in comprising a full sentence and more. It dosnt seem to let up. My liver area hurts and interested to know why.


    I'm so very new to this and could use a helping hand. I apologize to for the lengthy post. I am a paramedic and don't want to lose my job over it. I would have thought if I stopped the
    B12 it would have eased up
    By now

    Thank you all.

    Tyler Mckinzey
     
  2. Valentijn

    Valentijn Senior Member

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    Those SNPs typically won't have a noticeable impact.
    It's normal to have a bit of a reduction in MTHFR functioning. Pretty much everyone does, with no illness resulting.
     
  3. Lyme_Paramedic

    Lyme_Paramedic

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    Thanks for the reply. So are you saying that my symptoms may not be caused by any mutations.
     
  4. Valentijn

    Valentijn Senior Member

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    It's extremely unlikely. They are very common variations with pretty limited impact.
     
    ebethc likes this.
  5. Lyme_Paramedic

    Lyme_Paramedic

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    That's very weird. My Lyme literate physician also versed in mtfhr seemed pretty convinced that detox was my problem and that my genes could be making that worse
     
  6. taniaaust1

    taniaaust1 Senior Member

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    Hi, those results usually are not ones to worry about.

    I've read thou before that those that those who have double copy of COMT mutation may not be able to tolerate methyl groups well so things like methylB may cause issues so hence be wrong in your case for you to be taking.
     
  7. Valentijn

    Valentijn Senior Member

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    Yes, a lot of alternative practitioners have been sucked in by Yasko's ridiculous claims. But the scientific research into those SNPs contradicts most of what she says, and is the more reliable source.
     
  8. Daffodil

    Daffodil Senior Member

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    @Lyme_Paramedic are you antibiotics? have you had a DNA stool test?

    if you don't eat gluten for a long time, you lose antibodies for it so if you suddenly eat it, you feel ill. a doctor told me this.

    xo
     
  9. caledonia

    caledonia

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    It seems to me that if you continue to avoid gluten, the brain fog should eventually clear up.

    My suggestion would be to bring your own food to parties if you're not sure if there will be anything safe to eat.

    If you take your 23andme raw data and run it through Sterling's App, there are two celiac/gluten intolerance genes you can look at. I have one mutation on one of them and get stomach/gut pains from gluten.

    If I eat enough gluten to cause the stomach pains, it takes about a week to clear up.

    See my signature link for a lot more info on methylation, SNPs, etc.
     
    MastBCrazy, ahmo and ebethc like this.
  10. Lyme_Paramedic

    Lyme_Paramedic

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    Thanks for the message. No stool sample. I have been off gluten since the 5 of July and have not improved much

    Very nervous
     
  11. aaron_c

    aaron_c Senior Member

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    @Lyme_Paramedic :

    Let me know if I understand you correctly: Before this episode you were on a maintenance dose of methylfolate and methylcobalamin (if so, what was it?). You then took more methylcobalamin to help with detox, but it seemed to make you tired, so then you stopped taking methylcobalamin alltogether, although you kept taking whatever the maintenance dose of methylfolate was. Three days later you started experiencing cognitive impairment with pain somewhere around the bottom of your right rib cage.

    Is this correct?
     
  12. sarah darwins

    sarah darwins I told you I was ill

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    Two weeks isn't long. I would give it much longer. I seem to remember that when I stopped eating gluten it was a month or so before I started feeling benefits. Perhaps 3 months before all the benefits accrued.
     
  13. Daffodil

    Daffodil Senior Member

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    stopping gluten is not going to stop this serious autoimmune disease. you may need another doctor, someone a lot more aggressive
     
    ebethc likes this.
  14. Lyme_Paramedic

    Lyme_Paramedic

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    Thank you for replying sorry for the confusion. Let me kinda re word it alittle which may help

    I have been under treatment for Lyme and all the great stuff it brings with it. My doc thinks at this point Lyme is not the main issue and ordered the 23 and me test to confirm a suspicion of poor detox. At that point no treatments were ordered. I have been instructed to be gluten free for a year prior to this. I have been doing pretty well with hiccups here and there.

    So my test is interpreted as the two COMT genes (my doctor said those were detox genes) at the top are said to be complete mutated. She also said one of my vitamin d genes is double mutated. A couple of mtfhr genes have single mutations.

    At that point my appointment was schedule for the week of the Fourth of July. On the Fourth of July I went to a family function and was under the impression there would be gluten free options and found out that it was not the case. I was extremely hungry and at pizza and pie. The next day I had a funky headache on one side of my head and thought maybe my Body is overloaded with toxins and inflammation was taking place. So I took 800mg Motrin and a 5000mcg b12. An hour later I was fatigued and didn't feel right. As days past my cognition has tanked along with crippling brain fog setting in.

    I have now went to my doctors this last Friday and was told that from those gene markers it tells them my detox sucks for and dead Lyme,toxins,stress, and many other burdens.

    So I have not started treatment just yet I
    Have not touched methyl b12 or methyfolate as doctor ordered just yet.

    I am taking milk thistle now along with turmeric, and high end omega 3.

    My head hurts I don't feel right and my
    Cognition,physical awareness, memory has not improved it not worsened more

    Any suggestion
     
  15. Sushi

    Sushi Senior Member Albuquerque

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    That is a hefty dose of methyl B12. Some don't tolerate methyl B12 but do tolerate Hydrox B12--I am one of them.
    I'd guess those would be the receptors. Many have SNPs in these receptors. Mine, on paper, are lousy, yet I respond well to D3 supplementation.
    You might want to read up on the difference of taking one of these alone and the effect of taking them both together. There is the "low and slow" approach then and some find that they can tolerate higher doses of the combination. What doses of methylfolate and methyl B12 did your doctor suggest?
     
    Lyme_Paramedic likes this.
  16. Lyme_Paramedic

    Lyme_Paramedic

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    Thanks

    I don't no how to find another doctor

    Any suggestions on where to start

    I live in Florida
     
  17. Lyme_Paramedic

    Lyme_Paramedic

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    My doctor stated that b12 1000 and folate 400 and if that's to much we will adjust lower.

    Does it sound like my doctor has the right idea. I thought Lyme was going to be the end all be all but I guess not

    Someone said on this site that it is highly unlikely with the genes that are mutated it can't be a detox/methylation problem.

    I just don't want my doctor walking me down a road that isn't the right one.

    I also have abnormal HLA mutation for Lyme/'mold


    My doc has me on d vitamins prescription
     
  18. Sushi

    Sushi Senior Member Albuquerque

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    There are several ways of proceeding. While some think that this would be a standard dose, others might see it as a "target dose," in other words, start lower and increase the dose as tolerated. When I was starting, 400 mcg of folate was way too much and put me in bed for at least a week. I had to stop it and then do crumb doses of folate and slowly increase. After a few months I could tolerate 400 mcg. But, we are all different. You may want to jump in and try that dose and see how it goes (it took a few days for me to get the tough reaction), or you might ask to start lower and work up.
     
  19. Lyme_Paramedic

    Lyme_Paramedic

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    Thanks for the advice I appreciate it

    What is worrying me is that I am not taking anything (b12 or folate) yet I feel so terrible. Headaches and eye soreness the cognitive worries me. I couldn't imagine taking b12 and folate in this state
     
    Sushi likes this.
  20. ahmo

    ahmo Senior Member

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    I found Yasko's info useful, used her roadmap to begin methylation. Hope you get over this soon. Caledonia's got excellent resources for methylation.
     

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