Finally found a practitioner...update

[Mindy]

I found a consulting nutritoinist who understands MTHFR and I spoke with him briefly last week and again this week. My symptoms had spun out of control last week where I felt chest tightness, difficultly breathing and intense head pressure. I'd even gone to urgent care for this with absolutely no luck.

The nutritionist said that I'd gone too far with eliminating sulfur and that I needed insulin and sulfur back in my diet right away. This did seem to help with some of those symptoms. But now I'm at a point where I'm reacting to a ton of chemicals and foods. He looked at my SNPs and said it's b/c everything has been activated - my histamine levels and my gut sensitivity genes including SHMT. He suggested an anti-inflammatory diet, including no gluten, dairy or soy. We're doing a lot of additional testing including a GI profile. Now I have stomach pain as well as head sensitivity. Everything has progressively worsened over the past month.

The odd thing about all of this is that my GI profile from May was pretty good; my gut wasn't in bad shape. Now since taking several herbs/ABX for a UTI, things have spun out of control. I think this is all the result of taking methyl supplements earlier this year. Nothing like this has ever happened before.

My consultant agrees that I wasn't even a candidate for treating methylation ( no CFS or Fibro), but a dr. who didn't know any better put me on them based on a homozy A1298c. Things have been very weird ever since.

I just want to put a warning out there to find a dr. who really understands this stuff b/c I didn't really have any serious health issues prior to taking the methyl supps....other than chronic UTIs, which I'm also dealing with. This MTHFR path has really caused me to take a turn for this worst. Prior to this, I never missed work, rarely got sick, fatigued or anything.

@caldoneia or any others...if you have any tips for getting the gut to calm down, I'd appreciate them. The symptoms were just in my head (which he said gut problems can manifest in other areas); now I'm feeling it in the gut as well with a lot of pain.

I still have an appt. at Mayo next week with the one dr. they have that treats MTHFR. I think I'll keep it to make sure i'm not missing anything. But I did also go to Mayo's ER this weekend to make sure there was nothing wrong with my head, given the increasing pressure. CT-scan and chest x-ray were fine; they had no clue what was going on though. But at least I didn't have to worry about anything bad going on with my head.

PS - any idea how long it might take to calm down my inflammation/digestive system?

Thanks for listening!

 

[Valentijn]

Mindy - Unfortunately there is a lot of misinformation from Yasko & co about eliminating sulfur, due to CBS SNPs. It's all based on Yasko very badly misreading the research.

MTHFR A1298C can't cause many problems on its own. The trouble occurs when it's combined with heterozygous MTHFR C677T.

 

[Mindy]

@valentijin - I suppose you're right about mis-info about sulfur. However, I was treating with another MTHFR practicioner at the time who said I needed to get ammonia and sulfur down. Unfortunately, that dr. wasn't very helpful as things were going downhill. I feel like this new one may be more helpful.

And I don't have the 677 mutation, thank goodness. I have enough others

 

[ahmo]

Hi Mindy. Thanks for sharing this scary story. Low sulfur is essential for me. I had a gut crisis last week, pretty sure resulting from major metals detox. My research came up w/ Calcium for diarrhea.
(http://ibs.about.com/b/2012/01/19/calcium-for-diarrhea.htm) I was amazed how quickly this stopped the spasms in my gut/bowel. It's also excellent for eliminating histamines. I don't ordinarily take Ca, but w/ Vit C for histamine reduction. The tablets I had are large and uncoated, awful to take. So I tried adding powdered Ca carbonate, the cheapest form, in my footbath. It's worked brilliantly. In fact so brilliantly, that I'm now adding all my powdered supps (mostly aminoes) to my footbaths. Also how's your potassium? Doesn't sound like it's low according to your symptoms, (headache?) but I find I need a LOT at baseline, and more when detoxxing or stressed. I've been following GAPS diet going on 2 years. It's non-gluten/dairy, + a lot of healing broths and fats. Hope you're feeling better soon and get some good info @ your appt. ahmo

 

[newradost]

Hi all,
my child is also on low sulfur as he even can't eat cabbage without the symptoms. He is taking yucca but still this can't help so much with it. I was digging in the health area as he has a lot of symptoms as mastocytosis, histaminosis, food allergies, gut inflammation etc etc and when I began to do enemas with CD I found a creepy parasite in this stools. I have done a lots of tests that indirectly point out to parasites but non was positive. even the Metametrix DNA stool test - "Parasite found taxonomy unavailable." So I write a post here how we get symptoms free but not cured at all. This parasite is unknown for the medicine and don't respond to any of the known treatments. Check the post if intresting There are links and info about. http://forums.phoenixrising.me/index.php?threads/to-all-that-suffer.24985/

 

[Mindy]

Hi Mindy. Thanks for sharing this scary story. Low sulfur is essential for me. I had a gut crisis last week, pretty sure resulting from major metals detox. My research came up w/ Calcium for diarrhea.
(http://ibs.about.com/b/2012/01/19/calcium-for-diarrhea.htm) I was amazed how quickly this stopped the spasms in my gut/bowel. It's also excellent for eliminating histamines. I don't ordinarily take Ca, but w/ Vit C for histamine reduction. The tablets I had are large and uncoated, awful to take. So I tried adding powdered Ca carbonate, the cheapest form, in my footbath. It's worked brilliantly. In fact so brilliantly, that I'm now adding all my powdered supps (mostly aminoes) to my footbaths. Also how's your potassium? Doesn't sound like it's low according to your symptoms, (headache?) but I find I need a LOT at baseline, and more when detoxxing or stressed. I've been following GAPS diet going on 2 years. It's non-gluten/dairy, + a lot of healing broths and fats. Hope you're feeling better soon and get some good info @ your appt. ahmo

Interesting, so you added calcium and vit c to help heal the gut? I like the idea of the foot bath since I'm not tolerating anything right now. My potassium is actually on the low end. Thanks!

 

[Mindy]

Hi all,
my child is also on low sulfur as he even can't eat cabbage without the symptoms. He is taking yucca but still this can't help so much with it. I was digging in the health area as he has a lot of symptoms as mastocytosis, histaminosis, food allergies, gut inflammation etc etc and when I began to do enemas with CD I found a creepy parasite in this stools. I have done a lots of tests that indirectly point out to parasites but non was positive. even the Metametrix DNA stool test - "Parasite found taxonomy unavailable." So I write a post here how we get symptoms free but not cured at all. This parasite is unknown for the medicine and don't respond to any of the known treatments. Check the post if intresting There are links and info about. http://forums.phoenixrising.me/index.php?threads/to-all-that-suffer.24985/

Hi - I'd just say to be careful with low sulfur and make sure you don't go to NO sulfur. That's essentially what I did, went too far wih it and got negative effects. I also had the parasite - taxonomy unknown on the metametrix stool test. My practicioners think it was the "fry bug" (can't remember the official name, but you could search for fry bug; apparently a strain of bartonella identified by Dr. Stephen Fry who has a lab out of AZ). I treated for it with plaquenil for a year. Re did the stool test and was negative for parasites; however, I never had a change in symptoms - which was mainly recurrent UTIs.

As for the yucca, my first practitioner recommended this for ammonia, not necessarily sulfur. I think it may have helped at first, but as my situation worsened, it produced negative effects when I took it. My new practitioner who seems to know much more, said not to take it. However, I don't know if he means in general or just for me at this point; sorry that's not of much help!

 

[caledonia]

Hi Mindy,
It sounds like you're on the right track already with fixing the gut. The ABX will kill off the good bacteria which will allow the bad bacteria to grow out of control, causing problems. If you're having an inflammatory response, it sounds like you may also have leaky gut. Candida is the main culprit for that.

So eliminating those common inflammatory foods and any other foods that you react to is good to lower inflammation. Getting stool testing to see what is going on in your gut is good too.

After that, my research is showing that a 4R gut rebuilding program is the best method to fix the gut.

In short, it's:
Remove - get rid of the bad bugs, use stool testing results to see what bugs you have and what herbs/meds will be effective against them
Replace - supplement for low stomach acid, low enzymes, etc, whatever shows up on your gut test., add mucilaginous supps for the gut lining,
Reinoculate - add in the good bacteria - lactobacillus, bifiobacteria, s. boulardii,
Repair - repair the tight junctions to fix leaky gut - this is glutamine and other vitamins and supps.

The whole process will take several months. I need to get my research written up and posted still, but there will be a link to it in my signature when it's done.