Met with Functional Medicine Dr. 
twinkl
11 y
2,784
† Cross †
I live in a major metro area and all of the recommended functional/integrative med drs. (that I could find) are booked and not accepting new patients. So I drove 2 hrs to see one that has several good reviews.
He was the first dr. that didn't seem overwhelmed by my situation (which is food/chemical sensitivities to the point where I wasn't really able to eat anything without difficulty breathing). He looked at some previous test results, including thyroid and a GI test from May, and said that my thyroid isn't functioning properly, which is affecting adrenals, liver and pancreas. He also thinks my gut dysbosis is a factor (including h. pylori).
He's doing more bloodwork and the NutraVal test from Genova, which looks at everything (I've heard it's a very good test).
He wants me to take De-Hist (includes Vit C, Bromelain, Quercetin and nettles leaf). I started with small amounts yesterday and seemed to tolerate it, thank goodness. he also wants me to take digestive enzymes and green vibrance (I'm hoping I can tolerate these). I'm happy b/c he thinks he can help!
I want to put a warning out there that this all started after taking methyl-b-12 and methyl folate after my dr. recommended it for "optimal health." The problem is that when you mess with the methylation cycle without understanding it, you can really screw a person up (just read this from a dr. yesterday). That's what happened to me. I never had any of these issues prior to taking those supps. And all of this food sensitivity started with those supps. I stopped them back in Mar/Apr, yet the problems continued and finally exploded a couple of wks ago. 2 practitioners I've had to seek out since both said that I should have never messed with methylation b/c I was healthy before. It's so unbelievably frustrating knowing that's what started these problems, and this is the worst my health has ever been.
- Re: Met with Functional Medicine Dr. dave505
11 y
2,640
MoreThis is a reply to # 2,116,705Wow about the warning!
Thanks twinkl - i was about to start the protocol for a MTFHR problem and i was thinking about methil stuff. Good point! Could you tell how much did you take and if was after a MTFHR test? just curious.
Good start from your new doc "He also thinks my gut dysbosis is a factor (including h. pylori)".
He seems ok. good for you!HP can create a lot of mess in your body.
Would you mind keeping us updated with the progress? I'm in a similar situation but no functional doc in here / Europe. Read and listen a lot to understand whats going on.
Also Hpilory and candida but many more.
Many thanks
- Re: Met with Functional Medicine Dr. twinkl
11 y
2,568
This is a reply to # 2,116,769Good timing, yes, please be careful with the methyl supplements.
I just read one dr. who understands this stuff posted the following:
"It is not optimal if your clinician tests only the MTHFR genes. If these genes come back abnormal, and you are given the usual massive dose of 5-methyltetrahydrofolate, your condition may be made significantly worse. You may develop symptoms that can take months or years to resolve. You do not need massive doses of methyl groups. You need the appropriate number of methyl groups for your genetics."
Unfortuntaly, my dr. did just this, tested for only MTHFR and based on a homozygous A1298 (which is NOT the worst mutation) told me to take methyl b-12 and methyl folate and stop my current basic b-complex, which I had taken for 2 yrs. Prior to this, I had recurrent UTIs but was relatively healthy, never got sick, had fatigue, never missed work, no food sensitivities whatsoever.
I can't remember the dose I started on, but it was just one of each pill/day, but I didn't start with a low dose as is recommended (b/c I wasn't advised to). So shortly after starting the supps, I began having weird food reactions and head pressure. I stopped the supps, went on a low sulfur diet, which seemed to resolve the weird responses. But thinking back, it didn't resolve them. I continued to have weird reactions to medications and certain foods. It continued to worsen until 2 wks ago when everything exploded and I couldn't tolerate anything but a few items on the Failsafe diet (thanks to this site and Faith's recommendation; that saved me).
It's been about 8 days on this diet, and things SLOWLY seem to be improving, but I've been working from home for 2 wks now, which is unlike me (I love my job). Thankfully my boss is supportive and concerned b/c he's seen my weight loss in basically a 2-wk period.
I'm not certain who should treat with methyl supps, maybe just those who are very ill, but I've now found a nutritionist and functional med dr. who say I should NOT have b/c I wasn't sick, which of course, I totally agree with now.
So just be careful if you go that route. A lot of people are left to find a lot of info on their own in trying to navigate methyulation b/c so little is understood and if you run into a problem, you can't just go to your local dr. for help. They won't understand it. Bottom line - I 100% regret going down that path. If only I knew then what I know now.
- Re: Met with Functional Medicine Dr. twinkl
11 y
2,545
This is a reply to # 2,116,800I should add that the reasons I suspect those supplements were bad for me are (again, these are my own theories):
1. I've learned that folate and b-12 increase histamine, and I began taking both without balancing it with a complete b-12 as I had been doing prior
2. Once I got into this mess, I ended up doing the full 23andme testing based on another practicioner's advice to see the full methylation genetic defects, turns out I had defects in the DAO genes, which regulate histamine. B/c I NEVER had a problem with histamine foods before, I believe that taking the methyl supplements may have caused this defect to become activated, which led to my inability to detox histamine.
I now believe that my histamine levels are elevated so much b/c of the above (plus, I was eating a lot of high histamine foods this summer without realizing it), and that is part of why I'm in a mess now.
The dr. I saw yesterday said that he doesn't necessarily recommend treatment based on genetics alone b/c they don't take into account the phenotype, which is how your body functions based on environment, nutrition, etc.
Good luck in deciding how to proceed with this. I just feel obligated to put the warning out there b/c I really wish I had been aware beforehand.
- Re: Met with Functional Medicine Dr. dave505
11 y
2,500
This is a reply to # 2,116,801twinkl,
many thanks for your reply. i need to read them again and i'll come back with some questions if its ok for you.i'm away from home now.
so i guess the idea is to not "treat" this mutation until solved the root cause...hm
what kind of enzymes are you taking. and is De-Hist helped you?
last doc ive discused with told me to take adrenal rebuilder before make a cleanse but im not sure
anyway...will come back- Re: Met with Functional Medicine Dr. twinkl
11 y
2,560
MoreThis is a reply to # 2,117,740Sure, feel free to ask questions about the mutations.
I think I'm still too chemically sensitive to take everything he suggested at this point. But I have some digestive enzymes that I tried taking a small amount. Same with the d-hist; i took it for 3 days and think it helped. But by end of day 3, I felt like it was causing a chemical sensitivity reaction. So I may try to reduce the amount of stop for a few days. This Elimination Diet has definetly helped too.
I'm not sure yet what my dr. will recommend for thyroid/adreanals as we're waiting for the NutrEval test to come back first. He just suggested starting with enzymes, d-hist and green vibrance (may still be too soon for that).
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- Re: Met with Functional Medicine Dr. twinkl
11 y
2,560
- Re: Met with Functional Medicine Dr. dave505
11 y
2,500
- Re: Met with Functional Medicine Dr. Faith110
11 y
2,571
This is a reply to # 2,116,800I'm so glad that Failsafe is working for you!! I've always been wary of treatment based on genetics myself. Have been tempted quite a few times to get into the whole methylation thing but because of stories like yours and another friend I know who has POTS I was terrified to mess with it. I do know that I made myself sooo much worse by experimenting with various supplements. In the beginning of my illness anxiety, adrenaline rushes, and insomnia were my worst symptoms. I then began experimenting with herbs and vitamins and got so much worse..eventually leading to all the crazy sensitivities I battle with today. People think that just because supplements are sold OTC that they are not harmful and don't pose as much danger as prescription meds do but in my opinion they can be just as dangerous in the hands of people who don't know any better.
I think everyone on this forum can completely agree with the statement "if I only knew then what I know now"!
More
- Re: Met with Functional Medicine Dr. twinkl
11 y
2,578
This is a reply to # 2,117,423Wow, that's surprising that you had trouble with herbs and supplements. And that's scary to me b/c I've taken a lot of herbs/supps over the past few yrs. One dr (the same one that put me on the methyl supps) has me treating for lyme with herbals, but I don't think I really have lyme. B/c I don't have the typical symptoms. She thinks I have it b/c of my UTIs but after 2 yrs of treatment, my bladder is no better. I was ready to stop the treatment when all of this happened.
But b/c I get so many UTIs, I always try to use herbs before ABX, so I hope this sensitivity doesn't last. Also, this new dr. gave me an herbal product for histamine which does seem to be helping. He tends to use supps before medication, I think, since he's a functional med dr. But he has very good reviews, so I'm excited that I found him.
But, yes, you are right, I agree that they can be trouble when drs. don't understand. I believe they are powerful just like meds. So what are you doing to address your adrenals and/or thyroid?
- Re: Met with Functional Medicine Dr. twinkl
11 y
2,578
- Re: Met with Functional Medicine Dr. twinkl
11 y
2,545
- Re: Met with Functional Medicine Dr. twinkl
11 y
2,568
- Re: Met with Functional Medicine Dr. dave505
11 y
2,640
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