• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Dr. Recommendations Please

Messages
69
Hello, can anyone recommend a dr. who understands MTHFR? And is also aware of good testing to help figure out what's going on? I'm working with a couple of drs. who suppossedly understand it but not getting good results and having a lot of trouble with ammonia/sulfur and who knows what else. Neither are recommending the tests that Yasko mentions, so I think that would help.

This is so complicated that I can't find a dr. who understands and I've been to 3 local drs. in addition to the above 2. Things don't seem to be improving.

You can email me at dale.mindy@yahoo.com. Thanks very much.
 
Messages
69
I am in MN; I see that Dr. Karen Vrchota is on the list and in MN (although quite a distance from me). I was able to make an appt. at the Mayo clinic. They said a vascular specialist is the only one they have that treats for MTHFR. I don't understand the vascular connection but am glad to get in at Mayo. Thanks.

Has anyone heard any reviews of Dr. Grover in Denver? I've seen his name in the forums and he does phone/skype.
 

stridor

Senior Member
Messages
873
Location
Powassan, Ontario
It will be interesting to see how you make out. MTHFR raises homocysteine and this is a risk factor for CAD. I will be surprised if this person is aware of mB12 or ME/CFS. Go in expecting the least and hope to be surprised.
 

juniemarie

Senior Member
Messages
383
Location
Albuquerque
Stridor Thats a big concern for me as my homocysteine is high as is my cholesterol. Are there any studies or info as to if one treats MTHFR that it might help to lower these levels. The doc has always been curious as to why my levels are high because I am a thin vegetarian but that was before knowing about my MTHFR. I would love to find a way to lower them but have not read anything about that as a possible result of treating MTHFR
 

stridor

Senior Member
Messages
873
Location
Powassan, Ontario
juniemarie
Yeah, so I'm C677T++ and you have the compound hetero 677/1298.
Treating MTHFR, MTRR and getting the methionine cycle going will lower homocysteine and will decrease your inflammatory load. So yes, you can make a difference in regards to your heart.

I think that unless someone has familial hypercholestrolemia that cholesterol can be an adaptive response. How high is it?

This is just theory....the liver might release cholesterol in response to things that irritate the arterial system. Could be too much sugar or insulin or perhaps homocysteine...or mercury. My brother and I have lowered our cholesterol back into the so-called "normal range" just by removing our amalgam fillings and chelation of mercury.

That was our problem and yours might be homocysteine. Mayo will be able to help you I think. They will "get you" in terms of the physical manifestations of MTHFR...be interesting if they understand about the whole ME/CFS and psych component.