1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Patient Experience: "What Bronllys taught me about pacing."
In 2012, Maya, who had tried to cope with ME/CFS on her own for many years, attended a pain management centre in Wales, U.K., and is now able to achieve more through pacing and acceptance, than she had been able to before the course...
Discuss the article on the Forums.

New member, major gut problems, desperate

Discussion in 'The Gut: De Meirleir & Maes; H2S; Leaky Gut' started by impossible, Jul 18, 2013.

  1. impossible

    impossible

    Messages:
    23
    Likes:
    20
    Hi everyone! My name is Dave and I’ve been checking out this forum for about a year now and have used much of the knowledge posted to try to get through cfs/ocd and back to good health. I have made alot of progress in some areas as well as gone backwards in others, specifically major gut problems. I finally decided to join and post because I just got my methylation panel results back and I have 9 snp’s. I used Yasko’s test and posted questions on her forum about what to do and just got a generic response as to how to proceed. Nothing more than what I basically already knew. Plus, I know there are various schools of thought and would like to hear from more than 1. That, and all of her tests and supplements are a fortune and I have no clue as to what ones I actually really need. I don’t know much yet and my doctor knows next to nothing in this area. In my total brain fog and weak mental and physical state, I need some help on some specifics because I cant absorb anything I try to read. My snp’s are MTR A2756G +/- MTRR A66G +/+ MTRR 11 +/+ BHMT 1 +/- AHCY 1, 12, & 19 +/- CBS A360A +/+ SHMT C1420T +/-. They say to first treat the gut (which I am going to be relying on methylation support at this point because Im out of other options and very desperate), reduce glutamate hyperactivity, which I got a handle on, then to support the shortcut pathway but not until I've addressed the shmt and cbs. The latter part is where I need some advice specific to me. Then see if I can tolerate SAMe and eventually add in methyl b’s, which ones idk. I am hoping treating the shmt, cbs, and ahcy will be enough to help my gut turn the corner. My background:

    I am currently dealing with h. pylori, sibo (which is for the most part under control as ive only had it for about 6 weeks and ive been on a carb/fiber free diet for a 1 ½ weeks), candida, and inflammation to the point of having food sensitivities to literally almost everything. Im very sensitive to inflammation of the gut and my reaction to any type of it is horrible brain fog, ocd/anxiety,fatigue, restless legs, etc. Im almost positive I have at least one small intestine ulcer. Acids hurt bad. Anything I eat hurts bad and I become sensitive to it a few hours later. I can’t even take any antibiotics, natural or rx. I was doing a lot better until my gut became this inflamed and infected. This has been a constant downward spiral for the last 6-9 months and honestly I am pretty close to having to admit myself to the hospital I’m so weak, malnourished and underweight. The sibo got cranking a few weeks ago and really put a hurtin on me. I just started a homemade elemental diet today. I hope it helps. It consists of anhydrous glucose (5-6 ounces), amino acids (anabol naturals amino balance 30g), vits and minerals (twinlab allergy multicaps, potassium bicarbonate 4 g, sea salt 1 tsp, looking for a source of phosphorus) and in a day or two rendered animal fats that hopefully I won’t wind up sensitive to. I am really worried about the glucose, my guts burning a little still and is rumbling A LOT. Sounds like a fish bowl in there. Which its been doing for a couple weeks, but a little worse now I think. The rumbling gets worse after I stand and then I get a little gassy and I had sharp spasm-y pains (which ive never had before) a couple hours ago. Im not sure my gut is absorbing anything and I haven’t used the bathroom in a few days. I hate to jump to conclusions though and considering the next step is the hospital, and at the insistance of my family, Im going to ride it out a few days and see what happens.

    My test results so far are: homocysteine 6.8/ b12-989/ low adrenal hormones/ t3-t4 middle of the range/ liver enzymes and cbc okay/ Hair mineral test indicated high aluminum and calcium, low magnesium/ my gi effects showed h. pylori @ 5.7E + 005, candida +1 (after 6 months of diet and antifungals, including nystatin), highish lactoferrin and very low slgA. Other than that not bad, but that was before things got real bad/ my body temp is normally mid- high 96’s, its been high 97s since the gut infection, I haven’t ran a fever in 10 years despite getting sick a lot. That’s pretty much all the tests and stuff.

    Other than that Im your typical undermethylator with ocd/ anxiety/ add/ depression and a long history of allergies that have gotten better as Ive gotten older. Ive always reacted to vaccinations HORRIBLY including a tetanus shot at 16 that has just about ruined my entire adult life (im 30). I also started having problems when I was 13 immediately following three amalgams which I had the last of removed 18 months ago. My immune system has always been weak.
    I have responded VERY well to CoQ10 and l-carnitine. Im also taking 3-4 g glutamine, zinc, 500 mg lypo C, B5 500mg, 90 mg topical hydrocortisone, and 8000 iu vit D. I just started 1 drop 2% lugols iodine today. Im going to add magnesium glycinate, lithium 5mg, and 100 mg molybdenum soon. Unless there’s some reason I shouldn’t.

    So, what should I do concerning my snp’s keeping in mind my intolerance to just about anything except basic vitamins, minerals, amino acids, and things of that nature?

    Can/should I take a vitamin supplement with regular b’s (folic acid, cyancob.) while im on the elemental diet? Whatever I take has to be EXTREMELY hypoallergenic.

    What foods should I steer towards and away from? Assuming I can ever eat again. Any other pointers on the gut/infections?

    At this point I’ve lost almost all hope and belief that Im ever going to get through this, gut problem specifically. I really don’t know what to do or make of anything. I cant even work now and am just about out of money and am crashing on my brothers couch because im now homeless.

    Thanks for any help, I’ll will be sure to pay it forward wherever possible,
    Dave
  2. roxie60

    roxie60 Senior Member

    Messages:
    1,580
    Likes:
    443
    Central Illinois, USA
    I'm sorry you are feeling so sick Dave. I know it is scary when trying to find answers, deal w/ Drs that seem to know so little and be your own Dr. As far as your SNPs I dont see anythng specific to add to what you are doing but my mind is a bit burnt. Since you have been on PR for so long I dont want to be presumptuous but have you identified and eliminated food sensitivities??
  3. juniemarie

    juniemarie Senior Member

    Messages:
    296
    Likes:
    78
    Albuquerque
    Welcome Dave Wow it must have been exhausting just writing that......it will take time to digest all that info but there are some very smart people here (I'm not one of them) and I am sure they will come along and try to help you figure out some stuff to try.
    I do know that SMHT & CBS are first priority mutations. Address them first. I dont have SHMT but have been treating my CBS for a couple of months with molybdenum & manganese plus getting down thiols/sulphur in diet and testing urine with Sulphate strips to see if its all working. Some use Yucca and/or Butyrate to also help with sulphur and ammonia as well as charcoal to mop it all up. Have you been to Heartfixers site to read what he has to say...pretty much the same as Yasko but different details.
    I cant exactly tell what your addressing but i think its important to take one thing at a time beginning with CBS & SHMT before moving on to MTR & MTRR Wow I see you dont have MTHFR which is a biggie.
    While your waiting for someone more knowledgable then me I think there is a section of the forum devoted to the gut/stomach issue so check it out and try some searches.
    All I can say is hold on, and keep posting until you get the info you need. It sounds like your in a bit of an emergency/crisis place right now. Try not to panic and take more stuff than you should especially considering the condition of your stomach......... dont start new things all at the same time until you see your reaction to each one. Its rough I know but your in good company here. One thing that would be helpful is to put your SNP's in your signature so people can easily see what they are.
    Misfit Toy and helen1 like this.
  4. Misfit Toy

    Misfit Toy Senior Member

    Messages:
    1,335
    Likes:
    1,076
    Dave, I understand completely. All of you really understand and study your results. I don't have the ability to comprehend, my brain is defunct. However, I wanted to tell you that I understand your plight and stomach issues and allergies. I have allergies to almost all foods. Just started glutamine. I have cerebral allergies which lead to anxiety, panic and a feeling of desperation. Not to mention, feeling like someone just poured gasoline into my intestines and stomach. I also obsess and become hyperactive.

    So, Although I am not going to go into the hospital because I'm not losing weight,I am quite sick as well.

    Please know you are not alone and I am sure people here can help you.
  5. Valentijn

    Valentijn Activity Level: 3

    Messages:
    5,645
    Likes:
    7,257
    Amersfoort, Netherlands
    We can simplify things right away by throwing out the SNP results which aren't known have effect on the functioning of their gene. That leaves:
    MTRR A66G +/+
    MTR A2756G +/-
    SHMT C1420T +/-

    MTRR A66G (GG) results in slightly reduced activity for the MTRR gene, and is associated with elevated homocysteine. As your lab results show, this isn't causing actually elevated homocysteine.

    MTR A2756G might be responsible for helping to keep those homocysteine levels low by recycling it into methionine. This might cause low B12, but your levels seem to be high. Were you supplementing when that was tested? If not, the high B12 levels might indicate a problem.

    Heterozygous SHMT can exacerbate the effects of a MTHFR C677T problem, but you're heterozygous for SHMT and don't have MTHFR C677T.

    According to the Yasko SNPs (without the Yasko interpretation of them), there's no indication of any serious methylation dysfunction. But that doesn't necessarily mean those genes are functioning properly, as there are other SNPs which might be more relevant.
  6. caledonia

    caledonia

    Messages:
    2,695
    Likes:
    1,289
    Cincinnati, OH, USA
    I agree your SNPs don't look too bad in the scheme of things. For SHMT take folinic acid. Do the sulfur strips to see if your CBS is expressed. You have the minor one, so chances are, this won't be an issue, however, BHMT can make CBS worse. However, you only have one hetero BHMT, so not sure if there would be much of an effect.

    Then some methylcobalamin/adenosylcobalamin to support MTR/MTRR. One hetero BHMT doesn't really sound worth supporting? But if you wanted to support the secondary pathway, that would be some TMG. AHCY is supposed to take care of itself if the rest of the methylation cycle is working ok.

    SHMT and ACAT are known as the "leaky gut" genes. You're saying you have all these food allergies/intolerances, but leaky gut didn't show up on the metametrix?

    You have clues that you have two metals - aluminum and mercury. Those can gum up the works even if you don't have SNPs. I'm wondering if maybe you also have some bad detox genes. The only way to find those out would be 23andme.

    Is the elemental diet like doing UltraClear? http://www.metagenics.com/mp/medical-foods/ultraclear

    At one point my sister, who had IBS, used it and it was helpful.

    As far as foods, I would try foods that you have never eaten before, and then rotating them often so your body doesn't develop an intolerance to them.

    What is your stomach acid like - high or low? Ironically, problems that seem like high acid, can actually be from low acid. Google "baking soda burp test" for a cheap easy test for stomach acid.

    If you can possibly swing it, a consult with one of the MTHFRsupport.com practitioners who are good with gut stuff such as Jess Armine, Sean Bean or Tim Jackson, may be in order. This would run about $250 for an hour's consult.

    I would really go after this gut stuff first, and not worry so much about the supps.
  7. impossible

    impossible

    Messages:
    23
    Likes:
    20
    Thanks so much for the words and advice everyone. I am very grateful for your support. I've been at this long to understand the importance of being calm and methodical instead of rash and reactionary. And believe me, I've learned the lesson of one at time lol. Its the beginning of day 2 of the diet and things are beginning to settle down a little bit seems. The elemental diet is in essence a broken down diet of all macro and micro nutrients a person needs, basically predigested and easily absorbed. My gut doesn't handle acids well, so elemental fats are out of the question, hence the animal fats. Ive been rotating foods for 6 months now and getting rid of anything I've been sensitive to, but that list keep growing longer as the inflammation increases (because of any number of reasons) and my condition worsens. I cant really even handle whole food at this point. My stomach acid is pretty much ok, 2 1/2 to 3 minutes on the burp test. Leaky gut isn't really part of the gi effects test as far as I understand.

    Taking everyones advice, I am going to take a small amount of molybdenum & manganese, get some sulfur strips, and keep the sulfur intake low when I'm back on solid food. If folinic acid could possibly help, im going to start it. Whats the proper procedure there? Anything else I can do involving the shmt for my gut? Yasko says ahcy is another leaky gut gene. Why is it considered a non-player here? When should I start adding in methylation support and exactly how? It also sounds like a 23andme test is in order as well as maybe an organic acids test, or would there be something better (prolly gonna be a while before I can afford that anyways). What other snps would you be referring to Valentijn? Would 23andme cover that? And no, I was not supplementing any B12. I thought that seemed a little high as well which is why I posted it. What could be behind that? That number and my response to q10 and carnitine, as well as checking off a vast majority of undermethylation symptoms is what pointed me in that direction.

    So whats with the rift between the two schools of thought on snp's/methylation support. For the most part everyone here seems to agree with each other, who's the originators behind the idea? I've only begun to make my way through material. The one thing I've learned in this mass of confusion is that everyone reacts differently to everything. I plan on keeping a very open mind.

    All that I really know at this point is that I am super prone to inflammation, have been since birth, and that its causing most of my symptoms. That and my immune system doesn't seem to be very effective. That needs to change, quickly.
  8. caledonia

    caledonia

    Messages:
    2,695
    Likes:
    1,289
    Cincinnati, OH, USA
    Your symptoms are screaming leaky gut to me. I'm still working my way through this, but supposedly first you have to rebuild the mucous layer of the stomach, then the actual stomach lining. I just sent off my Metametrix sample, so depending on results from that, if I can't find enough info online or in a book, I'm considering consulting with one of the people I mentioned.

    ps. check out the links in my signature, especially Heartfixer.
  9. Gypsy

    Gypsy Senior Member

    Messages:
    108
    Likes:
    104
    USA
    Hi!

    You say you have SIBO. Have you tried antibiotics for this, such as xifaxan? SIBO can cause all sorts of problems including malabsorption. Some people need to treat the SIBO first, with antibiotics, before going to to supplements. Maybe even SIBO prevents a lot of supplements from working, if you can not absorb them?

    So sorry about all the problems you are having. I know you will find a lot of help here. Best of luck.
  10. Daffodil

    Daffodil Senior Member

    Messages:
    2,654
    Likes:
    637
    have u thought of seeing dr. demeirleir in belgium? his stool testing is superior to metametrix. his other testing seems better, too.
  11. 5150

    5150 Senior Member

    Messages:
    155
    Likes:
    41
    My gut was in bad condition for years, with all the "regular" bad symptoms normally reported in here. Not the least was severe pain in lower left quadrant of torso. After years of supplementing anti-candida, pro biotics, and other gut boosters, I went to the big guns: antibiotics.

    Doxycycline, 30 days & Cipro 30 days ; both taken concurrently.

    Result was amazing improvement of all symptoms, including regularity at the stool with much better form. In 2 years, I have done this process 3 times, with time between treatment, going up. I don't see this as a cure, but it's a Heck of a lot better than constant everyday agony as was occurring previously. The hard part is getting a doctor to prescribe the Abx, due to the "abnormal" usage (in their thinking anyway). The option is ordering from on-line pharmacy w/o scrip, and desperate people have done that. India makes decent pharmaceuticals, via Canada.

    Additionally, *very important*, I take a high dosage of the anti-inflammatory Wobenzyme N, at least twice daily. This is ordered via Amazon. It is such a huge help, and it does squash inflammation pretty well / however, it is a Daily Supplement, so add it to that long list

    Yes, there is the chance that the antibiotics will become ineffective , but so be it. Desperate people take that chance.

    Best wishes.
  12. 5150

    5150 Senior Member

    Messages:
    155
    Likes:
    41
    Sorry, I left out a very important piece of info: the fix is temporary... with me, 3 - 4 weeks after stopping the Doxy /Cipro, symptoms return gradually. Then I re-take the abx until relief & wait until it starts going bad again, and repeat until you can't stand doing it anymore. There is a big chance of resistance building up with this regimen. However , the time of "relief" is worth it to me while building up some strength to keep fighting.
  13. acer2000

    acer2000 Senior Member

    Messages:
    560
    Likes:
    191
    SIBO usually also responds to the FODMAP diet.

See more popular forum discussions.

Share This Page