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Hi. I’m new to this forum and have read it with great interest. I can relate to most of it. In looking into this I came across these two links which also make great sense to me, and seem to fit into the puzzle.
search “Ehlers Danlos MTHFR”
http://www.reumatologia-dr-bravo.cl/para medicos/articulos/FA Reasons.htmIt describes how low B12 or folate reduces NO. From what I understand reduced NO increases mast cell activity…
I have asked doctors for years why my folate and b12 levels are so elevated. They say you can’t have too much, only too little. It makes sense to me that I don’t have issues absorbing these vitamins, but issues with converting to their active form.
(FYI, my head circumference was above the 98th percentile at 12 months, as was one of my 2 daughters, after ultrasound for my daughter paed advised benign macrocephaly). My oldest daughter seems to have a growth hormone deficiency that they are still trying to work out.
I am going to request some of the relevant tests from my doctor and will let you know how I get on.
I have been tested for the MTHFR gene defect and do have it. I have EDS, POTS, CCSVI, MCAS, etc., etc. I take both the regular and activated forms of the vitamins effected by the MTHFR gene defect.
I have been tested for the MTHFR gene defect and do have it. I have EDS, POTS, CCSVI, MCAS, etc., etc. I take both the regular and activated forms of the vitamins effected by the MTHFR gene defect.
Ourfullhouse, I didn’t know that you had that! I saw a doctor for a while that tried to convince me that we had the same gene, without testing us. Basically, he lowered our homocysteine by increasing B6, then said it was too low, and we needed lots of expensive supplements. But I showed him how we decreased our B6 and increased our B12 and it balanced right back out again. So, heads up, my friends. Some people like to sell supplements! (But I’m preaching to the choir, I know. You guys are much too smart to let someone fool you like that!). 🙂 Diana
Hi. From what I understand reduced NO increases mast cell activity…
Welcome to the “family”! 🙂
I wish someone could clear this up for me! I have grappled with this for quite a while.
Here’s a great article:http://www.ncbi.nlm.nih.gov/pubmed/18285401
It describes how NO can prevent mast cells from activating (sounds good), and allows them to survive longer (not so good). Mast cells are not all bad, of course, but if we have too many, and/or they’re too sensitive, would it be best to have more of them if they’re less reactive? Hmm… I think the jury is still out on that…Great thoughts,
🙂 Diana
I had the genetic test for the MTHFR gene defects as well as the APOe gene test, which I am a “3/4”. For the MTHFR there is an rx, Deplin. The apoe finally explains why my cholesterol is so high. Small dose of Simvastatin has made a big help there.
Both these genetic defects have higher risks of cardiovascular problems.
Mthfr is linked to bleeding problems, miscarriages, etc. All things I have had.
I had the genetic test for the MTHFR gene defects as well as the APOe gene test, which I am a “3/4”. For the MTHFR there is an rx, Deplin. The apoe finally explains why my cholesterol is so high. Small dose of Simvastatin has made a big help there.
Both these genetic defects have higher risks of cardiovascular problems.
Mthfr is linked to bleeding problems, miscarriages, etc. All things I have had.
Can you tell me if you were symptomatic since childhood? Most of us end up with abnormal lipid profiles once we’ve been “triggered”, but we are OK until then. Was your cholesterol an issue for you your entire life? Very interesting stuff! 🙂 Diana
I don’t know what my cholesterol was till the last 10 years or so and its always been on the high side.
Speaking of triggers, I think my trigger was when i hemorrhaged during delivery 10 years ago. It was a home birth and the placenta partially detached and then my uterus stopped contracting so I just bled out. Placenta wouldn’t budge. Called 911, EMTs arrived, I had no detectable blood pressure, but was still conscience…just barely. Anyway at the hospital they surgically removed the placenta and gave me blood transfusions. This seemed to be the turning point in my health. Add to it that 2 years later I had the same thing happen again, though this was a hospital birth. After this second hemorrhage things went downhill faster.
So I wonder if a trigger could be like what I experienced instead of a virus/illness?
So I wonder if a trigger could be like what I experienced instead of a virus/illness?
I humbly believe YES! Any trauma (even surgery) can be enough to open our blood brain barriers, increase production of our inflammatory cytokines, and away it goes! And HEAVENS, that sure sounds like trauma to me!! SO glad you’re here to tell us about it! Whew!
Yes, it was pretty traumatic. 🙂
There is also something that shows up in my blood that I am wondering if it is in anyway related to cytokines, so maybe you would know, Dr. Diana? I have CIC’s – circulating immune complexes in high levels. My doctor refers to them as “clumps of junk”. Maybe I am way off base here, but something in my head is telling me they maybe related to the cytokines.
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