Lovenox for MTHFR

[NancyD]

Anyone with homozygous 677 MTHFR trying Lovenox? Have you noticed any improvements? Can you get it dye-free?

 

First we're going to try increasing (slowly) 5-MTHF from 10 mg to 15 mg. But if that doesn't help then our doctor wants to try switching DD from 5-MTHF to Lovenox. We just tested her anti-folate receptor antibodies and while her blocking antibodies came out negative her binding antibodies are elevated.

 

Would love to hear from anyone else who has done this test and anyone who has tried Lovenox.

[lfran]

What is the lovenox supposed to do?

 

Thanks.

Anyone with homozygous 677 MTHFR trying Lovenox? Have you noticed any improvements? Can you get it dye-free?

 

First we're going to try increasing (slowly) 5-MTHF from 10 mg to 15 mg. But if that doesn't help then our doctor wants to try switching DD from 5-MTHF to Lovenox. We just tested her anti-folate receptor antibodies and while her blocking antibodies came out negative her binding antibodies are elevated.

 

Would love to hear from anyone else who has done this test and anyone who has tried Lovenox.

[NancyD]

See the following thread:

http://www.latitudes.org/forums/index.php?showtopic=17846&st=0

 

I meant Leucovorin not Lovenox. Lovenox IS actually used for women who have MTHFR to sustain a pregnancy, but thankfully this is NOT our concern!! I got the two confused.

Leucovorin is folinic acid, which is step 2 in the methylation process. .

[lfran]

Thanks! I was on heparin (an older form of lovenox) for one of my pregnancies, and my son is C677T homozygous, so I was wondering if there was some connection that I missed!

See the following thread:

http://www.latitudes.org/forums/index.php?showtopic=17846&st=0

 

I meant Leucovorin not Lovenox. Lovenox IS actually used for women who have MTHFR to sustain a pregnancy, but thankfully this is NOT our concern!! I got the two confused.

Leucovorin is folinic acid, which is step 2 in the methylation process. .

[lfran]

You can get the leucovorin compounded, so I imagine it is dye-free. You can also buy it OTC, but in pretty small dosages (.8 mg).

Thanks! I was on heparin (an older form of lovenox) for one of my pregnancies, and my son is C677T homozygous, so I was wondering if there was some connection that I missed!

See the following thread:

http://www.latitudes.org/forums/index.php?showtopic=17846&st=0

 

I meant Leucovorin not Lovenox. Lovenox IS actually used for women who have MTHFR to sustain a pregnancy, but thankfully this is NOT our concern!! I got the two confused.

Leucovorin is folinic acid, which is step 2 in the methylation process. .

[Dedee]

It's great that you actually have found a doctor who is that knowledgable with MTHFR. My son is homozygous C677t. We just recently found out and I really haven't seen much changes since we started his treatment. I have seen huge changes since treating my daughter but she is heterozygous. Just curious, what doctor do you see that has helped with this? All three of my kids have some sort of MTHFR mutation and they are all KPU positive also. I would love to find someone who could help me with it, but most physicians don't know much more than I do. Congrats on finding a good provider.

 

Dedee

[lfran]

What part of the country (world) are you in or willing to travel to?

It's great that you actually have found a doctor who is that knowledgable with MTHFR. My son is homozygous C677t. We just recently found out and I really haven't seen much changes since we started his treatment. I have seen huge changes since treating my daughter but she is heterozygous. Just curious, what doctor do you see that has helped with this? All three of my kids have some sort of MTHFR mutation and they are all KPU positive also. I would love to find someone who could help me with it, but most physicians don't know much more than I do. Congrats on finding a good provider.

 

Dedee

[Dedee]

We live in Tennessee. When we travel to see our regular PANS physician in Florida, it takes us around 13 hours. Our LLMD is 5 hrs away. We have an Integrative Medicine Practitioner local who takes care of some issues and follows the medical plan we bring back from Dr. M. but she isn't real up to date on these issues. It's a shame such knowledge is so rare.

 

Dedee

[NancyD]

In FL there is Dan Rossignol and Jeff Bradstreet. They would know how to treat MTHFR.

[Kiera]

NancyD, just found out my ds is homozygous C677 , local pandas neurologist wants to do spinal tap to check for cerebral folate def., is this the only way to find out? Tx,

PS, she also mentioned the leucoverin.

Edited August 7, 2012 by Kiera

[NancyD]

Kiera, there is a blood test you can do through a research study In NY. Follow the link to the thread above and it should lead you to information about this study. The cost is $100 and insurance won't cover. I'm out for the evening but if you can't find it let me know and I will send it to you later tonight or tomorrow morning.

 

NancyD, just found out my ds is homozygous C677 , local pandas neurologist wants to do spinal tap to check for cerebral folate def., is this the only way to find out? Tx,

PS, she also mentioned the leucoverin.

[Kiera]

Kiera, there is a blood test you can do through a research study In NY. Follow the link to the thread above and it should lead you to information about this study. The cost is $100 and insurance won't cover. I'm out for the evening but if you can't find it let me know and I will send it to you later tonight or tomorrow morning.

 

NancyD, just found out my ds is homozygous C677 , local pandas neurologist wants to do spinal tap to check for cerebral folate def., is this the only way to find out? Tx,

PS, she also mentioned the leucoverin.

Yes I found the article (in fact I think this is the article the Dr pulled up on-line in the consult!) but I can't see where there is a current study where I can send blood? I'll read through the whole article later, but if I can send blood instead of an LP that would be great! How accurate is it, do you know? Tx so much.

[NancyD]

I think it's accurate, Kiera, but I don't know the % sensitivity of the test. You could call Dr. Quadros' office and ask.

 

Kiera, there is a blood test you can do through a research study In NY. Follow the link to the thread above and it should lead you to information about this study. The cost is $100 and insurance won't cover. I'm out for the evening but if you can't find it let me know and I will send it to you later tonight or tomorrow morning.

 

NancyD, just found out my ds is homozygous C677 , local pandas neurologist wants to do spinal tap to check for cerebral folate def., is this the only way to find out? Tx,

PS, she also mentioned the leucoverin.

Yes I found the article (in fact I think this is the article the Dr pulled up on-line in the consult!) but I can't see where there is a current study where I can send blood? I'll read through the whole article later, but if I can send blood instead of an LP that would be great! How accurate is it, do you know? Tx so much.