MTHFR Results Not Too Good

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This topic contains 74 replies, has 9 voices, and was last updated by  impossible 5 years, 3 months ago.

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  • #114742

    blueocean
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    Will keep you posted. I wanted to start at these dosages as you said I’m not likely to over methylate based on the COMT. I have the Niacin on hand so I’m prepared. I’m sensitive to anxiety so too amped up will trigger an anxiety attack… but today I didn’t feel anxious at all so we’ll see.

    #114744

    impossible
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    Topics: 16
    Replies: 606

    Thats good.

    Its just that for some people that have been short on those vitamins for a long time, taking them can hit them like a sledgehammer. Even those who should tolerate methyls well according to their methylation panel, some even have to start with 1 mcg a day. Everyone is different though, I just like to play it safe.

    #114910

    blueocean
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    Topics: 1
    Replies: 17

    Update: I’m 5 days in and I feel fine. Nothing much to report. The amped up feeling went away and now I feel just normal. Mentally I’m more even with no swings and physically I was fine before I started this so no changes there. Energy levels are good. One thing I did was up the dose of the b12 to 500mcg per day as I read Dr Ben Lynch typically recommended the mb12 dose higher than the methylfolate.

    I have no anxiety which is a good thing. It’s still early but wanted to give a report.

    #114914

    impossible
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    Topics: 16
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    Thats good! I take it you have also read Lynch’s write up on the 3 ways people react to methyl supplementation?

    The proper b12 to folate ratio is going to be different for everyone really, but if its workin for you, stick with it.

    #114965

    psalm34810
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    Topics: 0
    Replies: 15

    Dear Mr. Impossible: Just got off the phone with Dr. Boggess and hoping to get in to see him around March 1st. I started the low sulphur diet 3 days ago and am struggling finding enough stuff to eat with continuing mold-free and Canadida foods as well. I guess I can do anything for 7 days (Phillippians 4:13)! My ammonia levels are fine; is it still important to do the yucca root? Thank you, Julie

    #114982

    impossible
    Member
    Topics: 16
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    If you know your ammonia levels are fine, you do not need it. Out of curiosity, how do you know? Have you noticed any difference since removing those foods yet? It can be tough, creativity helps 🙂

    Sorry I havent had much time to devote to reading at all, I got SLAMMED with work. I will as soon as I can.

    #115091

    psalm34810
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    Replies: 15

    My current doctor told me that my ammonia levels were fine from recent blood tests. You asked about HLA types and mine are 17-2-52B and 13-6-52B. I’m on day 5 of the low sulphur diet and have had an intensifying of the seizure attacks in the evening. Yesterday I switched to a different probiotic BID plant-based but more strains; no FOS) and that was rough too. I was taking a plant-based one before it that only had lacto. acidophilus. Changes are always really rough for me. Dr. Boggess says my immune system is overreacting. Yup. Two years of this crapolaski. J.

    #115103

    impossible
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    Topics: 16
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    Im assuming you know 13-6-52b is a susceptible genotype. 17-2-52b is not officially a susceptible genotype, but several people with that genotype report lab findings consistent with biotoxin illness that respond to the same treatment.

    Have you had a C3a/C4a test ran through National Jewish Labs, had your TGF-b1/MSH/VIP/leptin levels checked, or tried cholestyramine? What did your sed rate/ crp results say? Are you familiar with the visual contrast test? What mold prevention are you practicing? Have you done an ermi test on your house? Have you studied biotoxin illness much?

    I do not know if Dr Boggess is up to speed on biotoxin illness. If he is not, perhaps a copy of Surviving Mold would be a nice gift. I would think he would be very interested in exploring that area of illness. Maybe you could write him a an email inquiring about that.

    Its weird how some people with hyperactive immune systems react to new things and eventually adjust and others do better with new things and then eventually react to them. I guess the former would make sense for you considering what happens with the immune system in the case of biotoxin illness.

    Urine ammonia is the more accurate test. Aside from the increased seizure activity, have you felt any different? Did you start make any other changes at the same time?

    Ammonia can cause or aggravate seizure activity. Taurine is known to do the opposite and is actually used as a treatment for epilepsy. Lowering sulfur intake decreases both of these in the body. At this point, I would recommend resuming what worked best for you, add sulfurs back in, and enlightening the doc on your findings.

    #115121

    psalm34810
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    Replies: 15

    Dear Mr. Impossible: thank you for taking the time to analyze my situation and share your expertise. Yes, I’ve had all of the labs related to mold and we remediated our home earlier last year after completing the ERMI test in addition to tests by an industrial hygienist. I treated with Losartan for a severely elevated TGF-b1 level and it did come down then I started to react to both brands of Losartan attempted at any dosage level! The other labs were non-contributory; don’t know if sed rate and crp tests were completed. I’ve had many standard and cardiac labs, Spectracell, hormone profiles, and more. VCS was normal. Used VIP for 3 months and began to react to that as well. MARCONs were absent initially then found again upon retest at the end of the year; started BEG spray and escalated to convulsions with the 2nd dose.

    I’ve attempted treatment with cholestryamine twice, even switching to a compounded version from Hopkinton Drug without sweeteners or sugar. My gut could not handle it no matter what I tried to deal with constipation. I had attempted activated charcoal in the past and was probably taking too many supplements concurrently to accurately discern my tolerance. Now my list is very limited.

    Now you see why I’m pursuing nutrigenomics!

    Dr. Boggess has a physician in his office skilled in mold issues. I really think the key lies within the 23andme data, eh? Increased seizure episodes continue for the second day and these occur in the afternoon after the dose of probiotic with more strains than I was taking. Will probably go back to the one with lacto acidophilus only so I can complete the low sulphur diet trial. I’m very beat up.

    Take care, J

    #115125

    impossible
    Member
    Topics: 16
    Replies: 606

    The hardest part in these types of situations is finding the key that unlocks the reaction problems and opens the door to the rest of the treatment options. I would definitely say that getting on some kind of an effective detoxifier is going to be imperative. If you are herxing too bad to go after the serious infections then your first priority should be on the detox. That should really help calm down the innate immune hyperactivity which should put a serious dent in the immune reactions to things, help you tolerate anything else that aggravates those symptoms as well as any amount of extra inflammation (which you need to kill those bugs!), and let your immune system focus on the things it needs to & be more efficient. What is your C4a currently? Have you done an ermi on your house recently or at least since the remediation? Do you avoid other places that could have mold? One hit is all it takes to put you back at square one (sicker quicker, right?), though it sounds like you would know that. Though im not sure how much of a difference its going to make with having lyme and not being on cholestyramine. Get that C4a down!

    #115127

    impossible
    Member
    Topics: 16
    Replies: 606

    Also, the mthfrsupport.com panel is the most extensive and would provide the most info. Thats the one you should take to Boggess. I think it costs $20. Ive been doing some reading, once I get solid info on what the wild types (normal gene’s) definitely are for the genetic genie detox panel, I’ll get you the info on those. 🙂

    #115429

    psalm34810
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    Topics: 0
    Replies: 15

    Hey Mr. Impossible: my C4a is 215.4 which puts it in a reasonable spot in the range I saw with the test results.

    Yes, I avoid places and foods with mold due to the severity of my reaction. Looks like I’m reacting to omega 3 foods too (i.e. BAD reaction to flax seeds!) so I’ve eliminated the foods highest on the list until I can start treatment with Dr. Boggess in March. Started 1/2 dose Kolorex to add to alternate with the Nature’s Way Black Walnut & probiotics for Candida. The research on Kolorex looked promising. No convulsions just tics after the first dose. I guess that’s reasonable for me. Sure is a tough road, every day!

    We did an ERMI test originally and no follow-up testing after extensive remediation about a year ago. Annual a/c, furnace & duct cleaning will be due in 2 months; filters get changed every 2 months and I clean A LOT! Grateful for hardwood floors. Got to get the immune reactivity down, per Dr. Boggess. I have a 1-hour special phone appt. tomorrow (to see if there are any more tests needed) before driving 3-hours for the in-office appt. in March.

    #115433

    impossible
    Member
    Topics: 16
    Replies: 606

    Did you do C3a at the same time?

    #115441

    psalm34810
    Member
    Topics: 0
    Replies: 15

    Yes, it’s 111.2 Did all of the other mold parameters per Dr. Shoemaker’s protocol as well, most retested later this year. MARCONs was the most significant finding but I wasn’t able to tolerate BEG spray. Antibiotics are out of course due to yeast. Oh well. The sinus issues are the least of my concerns at the moment!

    Dr. Boggess was very gracious. Are you he?

    #115447

    raster
    Participant
    Topics: 104
    Replies: 6838

    Do you get seizures when you are away from home? What kind of vitamin C are you consuming? A lot of it is corn derived vitamin C which destroys your brain which may cause seizures (FYI)…

    I don’t think the methylation cycle stuff will address your seizure problem…I personally think the toxins are causing this to get so bad, so my recommendation is to detox as much as possible.

    -raster

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