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» LymeNet Flash » Questions and Discussion » Medical Questions » Who are the best doctors for MTHFR.... that actually SEE patients and guide them?

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Author Topic: Who are the best doctors for MTHFR.... that actually SEE patients and guide them?
Tammy N.
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I would like to know who are the best docs out there actually treating patients and overseeing their care with regard to MTHFR, and the various assorted mutations. I think this can be a slippery slope.

My docs are not nearby. I feel like I need fairly local support. So if you have a crash, you can actually see the doc, they can do necessary bloodwork and adjust your protocol.

Thanks.

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Tincup
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Might want to contact your local hospital and ask. Also...

There should be a note on your test results recommending genetic counseling.

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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JJ29
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Tammy, thanks for starting this thread.....I'm also looking for a doctor in the NJ/NY area who really understands MTHFR and knows how to treat with the right supplements etc.

A couple of months ago I went to see a top hematologist at Hackensack Medical Center in northern NJ who I was told was very familiar with MTHFR....well, after he did a blood workup he confirmed what I already knew that I am heterozygous C677T .....did not think my high b12 and folate levels were an issue and were not related to MTHFR and since my bloodwork looked normal he dismissed me with no explanations about how to treat this mutation.....I was very disappointed about his treatment to say the least.

My well known llmd in NY is also not addressing my MTHFR mutation......he does not think it's anything to worry about ......this really surprises and bothers me! So I'm really left to my own devices about this......I am so thankful for the help I receive from all the people on this board...... I would be very depressed right now if didn't a place to share info and vent!

If anyone in NY/NJ has any MD recommendations please send me a pm.

Thank you!
JJ

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dal123
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Go to MTHFR.net and there is a wealth of info, you can consult with Dr. Ben.
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cocowyo
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Below is a link to the "Find a Doctor" page on MTHFR.net.

Make sure you scroll down to see a handful of doctors known to treat MTHFR.

http://mthfr.net/mthfr-resources/

--------------------
Clinical dx/muscle tests
+ CBS upregulation, parasites, babs
- bart, KPU, yeast, mold

Blood tests
MCTD (autoimmune): +RNP
MTHFR - homozygous C677T
CD57 - 192

Diet - modified paleo

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sparkle7
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FYI -

http://www.prohealth.com/library/showarticle.cfm?libid=16138

3. The best methylation test (the one we used in our study) is simply called a "methylation panel" from Vitamin Diagnostics Lab in New Jersey. [Now Health Diagnostics and Research Institute, phone 732 721-1234]. It runs about $325 for 11 measures of methylation chemistry, so it would be cheaper to just start the protocol, which is what I advise. I don't typically order the panel unless the patient is not responding to it adequately, so we can figure out what they are missing.

----

You can try calling Health Diagnostics and Research Institute, phone 732 721-1234]. They are in NJ. They referred me to someone but they specialize in treating autism... It's not cheap & I don't know if the doctor is good - so, I don't want to recommend him.

Health Diagnostics and Research Institute does testing for some of the doctors who use the methylation protocol - so, they might know of doctors around the area.

Good luck.

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tickled1
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http://drhyman.com/downloads/Autism.pdf

http://www.ultrawellnesscenter.com/

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nefferdun
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I just sent in the 30 methyl cycle mutations test and should get results in ten to twelve weeks. I will receive recommendations with the results. Then there are two doctors I can consult with if necessary. There are a couple of helpful yahoo group websites too.

I think this is relatively new and it is hard to find doctors that really know what they are doing, so you are probably better off having a telephone consultation with those that understand it best.

--------------------
old joke: idiopathic means the patient is pathological and the the doctor is an idiot

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Dan's Mom
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nefferdun, may I ask what lab you sent the methyl cycle tests to and how you got the test?

Could you also post the yahoo groups?

Thanks,
Karen

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Ivy
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I have had high B12 levels (off the charts) and some high Folate levels as well.

I always wondered why since my diet is plant based. After reading what JJ29 wrote it got me wondering.

Anyone know if this is a sign of MTHFR?

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nefferdun
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Ivy, the CBS methyl cycle mutation makes one sensitive to sulfa. Animal products are not good if you have this mutation. It builds up ammonia. This site explains it:

http://www.heartfixer.com/AMRI-Nutrigenomics.htm

And if I could consult with anyone, it would be that doctor or Amy Yasko.

Dan's Mom, Here is where I got my test:

http://www.holisticheal.com/comprehensive-methylation-panel-with-methylation-pathway-analysis.html

Here is one yahoo group for CFS. There is also one for autism.

http://health.groups.yahoo.com/group/CFS_Yasko/

Here is more good information about the methyl cycle mutations from Yasko.

http://me-cfsmethylation.com/viewtopic.php?f=1&t=56

--------------------
old joke: idiopathic means the patient is pathological and the the doctor is an idiot

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TerryK
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The vitamin Diagnostics test gives one clues as to where the system is blocked but it is not a test that tells you specifically which mutations you have.

My understanding is that it was recommended by Rich in part because it was so much less expensive than the Yasko test. The Yasko test seems to have come down considerably in price from when I took it.

I had a friend that took the Vitamin Diagnostics several years ago and it was very difficult to use it to guess which mutations she has.

Perhaps things have changed since then but I personally would rather know which mutations I have so that I can keep up with new research and learn other things besides what the few doctors focus on.

Terry

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tickled1
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Nefferdun,

Thanks so much for that link. I wonder if the mild reaction I had to glutathione IV was not a detox reaction as I was told but if I have the CBS mutation.

I've reacted violently to chlorella and epsom salts in the past which both have sulfur in them. I will certainly study this further and show it to my doctors.

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tickled1
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Nefferdun,

Do you know if it would be possible for my Metametrix testing to show glutathione wasting if I were to have the CBS mutation which makes someone sensitive to sulfur?

Would it be possible to feel better from glutathione after the detox reaction (if that's what it is, or it may be sulfur sensitivity-don't know) if someone had the CBS mutation or would any amount of glutathione make that person feel worse?

If that is all possible, what does someone do in that case if they have glutathione wasting? Or does glutathione wasting not occur in those individuals?

I don't know if that made any sense.

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Razzle
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I have a homozygous CBS mutation (i.e., 2 copies of the mutated gene), and anything that increases glutathione makes me sick. I also have low glutathione on tests, but have to find a way to deal with the CBS mutation first before I can go stimulating glutathione production.

--------------------
-Razzle
Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs.

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tickled1
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Ugh. This is so complicated....but fascinating!
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Tammy N.
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Tickled - I completely agree. This really needs to be a full-time job, researching and learning about all of this. Right now, my time is heavily divided between several competing demands. And all I want to do is to be left alone so I can read and research, because I KNOW I've finally stumbled upon one of the most KEY issues for me. I'm CERTAIN! Everything is finally making sense. Everything I read makes bells go off in my head.

And now it's late and I have to go to bed because I have an early appointment. But I'd rather just read read read, so I can plan my next step.

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tickled1
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EXACTLY Tammy N.!

I was so excited last night looking at the methylation chart feeling the same way like maybe I've finally found the key.

I said that to my husband and he looked at me like I was nuts b/c I was so excited about it! LOL!

I told him, not only may I have found the key to getting better once I "crack the code", I may have found the key to living forever! B/c everyone's methylation issues usually come into play later in age but with us it happens earlier.

I forget which link I looked at that said our family members that probably had the same mutations years ago didn't present with disease like us b/c they weren't exposed to the toxins we are exposed to today. Back then it took a lifetime for those toxins to accumulate and cause disease. Nowadays we are bombarded with toxins from birth! Makes me want to move to a deserted island!

I'm learning that methylation and detox are huge! Why do you think Suzanne Somers and other celebrities are getting glutathione as an anti-aging therapy!!!? Again, fascinating!

I want to go for another glutathione infusion this week but now I'm not sure if my "detox" reaction was a healing reaction or reaction to sulfur. I'm suspecting sulfur may be an issue b/c I've reacted horribly to chlorella and epsom salts which both contain sulfur. However, glutathione always makes me feel better after the so called "detox reaction". Anyone have any insight to offer or theories on that?

My Metametrix testing showed "glutathione wasting" but I don't know if I can still react to glutathione even if I have "glutathione wasting.

I'm reading and reading about this but it's giving me a brain cramp and making my head spin and I have to keep stepping away from it b/c it's so overwhelming.

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Tammy N.
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Well put above.... that our older family members probably did not accumulate a heavy toxic burden until later in life. Our world has become so polluted, so it's no surprise there are more and more people like us crashing at relatively young ages.

I want to move too....where we can get clear air, clean water and clean food. Wouldn't that be wonderful!?!!

It's hard to tell what the glutathione reaction is for you.... the sulphur or a detox reaction. I guess, if you feel better afterwards, that it's a good thing for you.

When I'm not in a particularly sensitive state, I'm good with certain therapies even though they have sulphur. Last year I did a lot of chlorella, alpha lipoid aside, NAC, garlic, etc. Then when the doc added MSM I started to get rashes. etc. From there, it seems like my threshold has lowered. I'm hoping to raise it back up again.

Also, I have decided to see a liver doc to see why I have elevated bilirubin. When you read up on this, it says that often people like this have a sensitivity to sulphur. Interesting, huh?

Some docs have called it Gilbert's syndrome, and say it's of no significance. Not true, when you really start to look into it. I wonder if this is my condition or not, because there have been a few times I remember getting my bloodwork back and my bilirubin was not elevated. I've been told babs can cause elevated bilirubin. And I know I have that. So maybe more babs treatment (which I never have really done enough of), may bring things back into balance?? More for me to ponder and consider and research and plan.....

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tickled1
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After much deliberation and hesitation I had another glutathione IV today and no issues!

My bilirubin is usually elevated too.

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nefferdun
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tickled, I am not the person to ask complicated questions. I wish I understood things better but it is all new to me. What I do know is very exciting. I can look back over the family history and understand how genes played such an important role in diseases.

This is another way this discovery is a life savor. My 24 year old son was diagnosed over a year ago with late onset type one diabetes which takes much longer to destroy beta cells (that produce insulin) than juvenile diabetes.

The only other person I know of that had this type of diabetes was an uncle. This uncle nearly lost his arm as a child after a small pox vaccination. He got diabetes as an adult and within ten years he lost both legs. His mother died of a sudden stroke.

I am heterozygous for C677T. If these two individuals were homozygous, it would explain the clotting that killed my grandmother. It would also explain why my uncle lost his legs. The thick blood would cut down circulation in his legs, making it harder to heal injuries, remove toxins etc.

It makes perfect sense. It means my son can be protected from this kind of tragedy. It might even mean that with proper intervention and treatment he can prevent complete insulin dependence. Here is what Yasko says about auto immune disease;

"New T cell synthesis is needed in order for T cell clones to expand and respond properly to an immune assault. T cells are needed to help to control the B cells and to balance TH1 and TH2 responses. If there are methylation cycle problems or mutations, you may have trouble making the bases that are needed for new DNA synthesis. If you cannot make new DNA, then you cannot make new T cells and as a result you may lack immune system regulatory cells."

It is lack of regulatory cells that causes auto immune diseases. The killer cells become out of control because there is nothing to call off the attack.

This is also why our immune systems are weak. It is why we get so much inflammation. It is why many of us develop auto immune diseases like MS and hashimoto's disease.

These mutations explain why my daughter (and myself) have ADD. It explains why my daughter had fibromyalgia when she was smoking. It explains my mother's dementia and my father's (and mine) vicious insomnia. It explains why some relatives are prone to addictions; why others like myself, can't even tolerate the stuff at all.

It explains everything. It is such a revelation.

--------------------
old joke: idiopathic means the patient is pathological and the the doctor is an idiot

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