What to try next with SIBO and methylation issues

[Freya Levy]

I'm new to this forum and am finding navigating a route to improved health is a huge uphill struggle. I have had chronic back and neck pain for over 20 years and have been taking levothyroxine for a good 10 years for an underactive thyroid. Over the last 3 years, I have been suffering with gut pain and issues. I have had all manner of tests, including the breath tests and have been diagnosed with SIBO and also presence in my gut of blastocystis hominis. I have had genetic testing by Genova Diagnnostics and this has come back saying I have a polymorphism on my CYP2C9 chromosome, I also have 2 chromosomes that carry the NAT2 polymorphism and 1 chromosome that carries the COMT polymorphism. I never thought that I would be deciphering my own genes in this way and wish I didn't have to! I am currently taking Lamberts vitamin E 400iu, Biocare Zinc citrate, Vitamin D spay, Better you magnesium spray, Biocare mega EPA, Biocare peppermint complex. I have also been taking high doses of Nutriadvanced berberine and grapeseed formula to tackle the SIBO. I seem to manage okay and all the above, though they do not offer a solution to my issues. I have tried Allicin, Turmeric, molkosan, triphala etc etc! Nothing is working for me. My nutritionalist advised me that it was crucial to try taking methylfolate and methyl B12 as this was something that my body needed and could not make itself, due to my genetic issues. I tried Biocare Nutrisorb methylfolate and methyl B12, as well as nutri advanced multi essentials one a day multivitamins, which include vitamin B12 and L glutamine. Taking any of these made me feel terrible and so I have stopped trying with that. I also tried NAG and slippery elm, but both gave me weak legs and so I had to stop that too. I will stick to taking my vit E, D, zinc, magnesium, mega EPA, but beyond that, I am getting to the point of feeling like maybe it's best to lay off trying all these other supplements, which not only haven't helped, but have made things worse! Sorry this is a rather rambly post, but just wondering if there is anyone out there with perhaps similar genetic mutations, or someone who thinks they have a helpful suggestion of new things to try or a way forward from here. Thanks a lot!

 

[zoe.a.m.]

Hi Freya,
I suspect I have many of the same issues you do but have been unable to get confirmation from specialists who can dx SIBO, etc. due to having no transportation. Several of the polymorphisms you mention look familiar as well, though it's been at least 6 months since I read any of those results. Were you also tested for the MTHFR mutations?

I was told to try methylfolate but that it was possible it would aggravate things rather than help, and that was true to the point where I had to discontinue it. I've recently been told about Deplin, which I think is just a pharma company getting involved with treating the folate part, but I'm not sure if people perhaps get better results with that? I've tried methyl B12 in a few forms and had very acute effects that made it impossible for me to continue. The one thing I've been able to tolerate (but am not currently taking for financial reasons) is a compounded Hydroxy B12 and compounded B-complex. I swear by the hydroxy form because I never have had a single reaction in the years of injections. Unfortunately, I had zero help with the sublingual form and only the IM shots have ever helped, and I believe my dosage was 5000 1-2x/wk, which is rather large by conventional standards, but I never had any issue other than my levels rising. It's interesting to hear about triphala as it was pretty recent that I learned of that, but didn't remain on it.

I believe xifaxan is used for SIBO or similar problems, but you may have already tried that or decided against it. I'm not sure how people do with it long term since it generally needs to be repeated, but I understand it's a pretty targeted abx and does not cause the systemic aggravations that abx often do. There is probably a lot of info here on the forums that I need to catch up on as I've been away for a while.

May I ask how you had the gut bacteria diagnosed? That type of specificity is something I dream of since I've read it's very important to know what bacteria you have present and that probiotics can be contraindicated in some cases.

It sounds like giving your body a break from the many supplements may be a good idea. It can be tough to tell what is helping/doing what. It took about 4 months of weekly B shots for me to feel a difference, so there's always the possibility of dismissing something too quickly or thinking a reaction is due to one thing when it's something else entirely. I'm not sure if any of this is helpful, but I hope there might be.

 

[Richard7]

I would read these
http://drmyhill.co.uk/wiki/Fermenting_gut_-_the_Full_Monty
http://drmyhill.co.uk/wiki/Fermentation_in_the_gut_and_CFS
http://thegutinstitute.com/cure-sibo

they will keep you busy for a while.

I tried GAPS, made me much worse, but others do well on it. I tried paleo, wahls, Autoimmune paleo, the ketogenic wahls etc, and the grace liu's 7 steps (minus step 5).

What seemed most important in the end was something included in myhill's advice taking betaine HCL to acidify my stomach, plus bile and enzymes together with a low available carb diet that was high in fibre and contained fermented foods.

 

[Freya Levy]

Thanks for your response Zoe. I got my bad bacteria tests done by Genova Diagnostics, it was a comprehensive parasitology stool test. It seems that having the SIBO and lots of bad bacteria is a big issue that needs cracking before going any further. I am interested in what you say about compunded B complex and will research this further. I'm in the UK and am not sure how easy it is to get this as an injectable form. Richard, thanks so much for all your links, I will need to take the time to read all that. Everything can get so complicated and involved!

 

[caledonia]

Thanks for your response Zoe. I got my bad bacteria tests done by Genova Diagnostics, it was a comprehensive parasitology stool test. It seems that having the SIBO and lots of bad bacteria is a big issue that needs cracking before going any further. I am interested in what you say about compunded B complex and will research this further. I'm in the UK and am not sure how easy it is to get this as an injectable form. Richard, thanks so much for all your links, I will need to take the time to read all that. Everything can get so complicated and involved!

The stool test should tell you what supplements or medications are effective against the type of bad bacteria you have.

With the COMT mutation, you could get mood swings from methylcobalamin. You can either try hydroxycobalamin or methylcobalamin with a bit of niacin (under 50mg) to cushion things.

See my signature link for more info on the 4R Gut Rebuilding Program and methylation info.

 

[Mary]

@Freya Levy - betaine HCL with pepsin can help counter various bad bacteria in the gut as well as SIBO. Many if not most of us have low stomach acid, and this can be a cause of SIBO and other bacterial imbalances in the gut. Here's a prior thread on this subject: http://forums.phoenixrising.me/index.php?threads/sibo-low-stomach-acid.36995/

Also I noticed you're taking levothyroxine which is T4 only - many do better on a desiccated thyroid product which has both T3 and T4, like Armour or Westhroid, there's a new one called NP Thyroid as well.

I would try the betaine HCL with pepsin first (I read somewhere that the pepsin added to the HCL is important, can't remember why) before trying prescription drugs which will have side effects. And if your stomach acid is low, the drugs won't really resolve the problem, or if they do, it would only be temporary because they're not getting at the root of what's going on.

First though it would probably be good to do the baking soda burp test which is described in the thread I linked - it should give you an indication of whether or not you have low stomach acid.

 

[outdamnspot]

[QUOTE="zoe.a.m., post: 739338, member: 174" I've tried methyl B12 in a few forms and had very acute effects that made it impossible for me to continue. .[/QUOTE]

Hi zoe, can I ask what reaction you had to methylb12?