I'm still struggling to read just the one single post about the deadlock quartet and signs and symptoms that might be concerning and the need to look at adjustments. But, for some reason, my brain just doesn't comprehend. I think it's because I get to the third group and I might have one symptom in one list, but not the others, etc... and I just can't quite figure out how to translate it into these are my five symptoms -- what might that mean?
Anyway... I've been working with a Doctor for a year and working one getting my methylation process working better. Forgive me for lack of references - my mind/thought process is improving in that I'm able to tie together more details - but tying the details I learn back to the studies I read to get them is still a little beyond the scope of my abilities at this point in time.
No official dx of CFS nor ME - but meet all the ICC criteria. Have been chronically ill for 9 years with two episodes of bed rest and the rest of the time spent working, but 'walking dead' outside of work.
Taking - methylfolate, methylcobalamin, lipsomal vitamin c, ALC, NAC - was taking a B12 complex to get hydroxycobalamin and anenosylcobalamin - but not lately.
Rx - Armour thyroid medicine
Diet: Gluten free/dairy free/low soy ... nothing heavy in saturated fats, nothing greasy/oily/fried.
Alternative treatments: chiropractor, acupuncture
My first symptom might JUST be a signal that my methylation process is working better.
1. Gout
... why I think it's a sign that my methylation process is improving
a. Gout has been rarely found in patients with CFS/ME and/or Methylation defects
b. Gout is caused by purines (found in food) being converted to Uric acid (normal process) - but too much uric acid creates crystals which causes gout
c. The methylation process impacts the processing of purines into uric acid
d. Poor methylators actually tend to do better on high purine foods (still looking into more details here, but per Rich - it might be tied to the fact that purines that aren't broken down get recycled... might be related to some offshoot of that.
e. Since purines aren't getting broken down as well for poor methylators - improving the methylation process means that more purines ARE going to get broken down into Uric acid
f. my gout symptoms didn't appear until AFTER about six months of methylation treatment
g. my diet is NOT contain any foods high in purines - however, I don't know if there was a 'build up' that needs to get processed out... at this point I am treating with A-C carbimide (a high alkaleine mineral) - it handles the pain more effectively than pain killers and doesn't seem to have any negatives that I can find over the basic minor risk factors
2. Blood clots
.... a much more concerning new (er) symptom
History:
I had a pulmonary embolism in 2004 after I'd been on and off (and on again) birth control pills. I've had preventative treatment every time I've had surgery, but not really any other time. I've developed one superficial blood clot after one of my surgeries (at an IV site) and identified as having two risk factors for being at risk for clotting - MTHFR (treating) and Protein C Deficiency (a rare, inheritable, clotting disorder).
FWIW - high homocysteine at the point of the PE directed the doctor to recommend folic acid, b6, b12 (and I didn't know any better about forms of vitamins)... within three months of taking those supplements, I had my first crash.
Protein C Deficiency is inheritable (and believed to have come from my father who died young from blood clots)... and in the clotting cascade, it's the bindings of the c proteins to the Factor V proteins that indicates when the body should STOP producing a clot (i.e., you've sealed the cut, let's stop and not go overboard). Since I don't have enough Protein C being created by my body - once it decides it needs to create a clot - it doesn't stop at the wound site (not that I have any wound sites)... but starts building little forts in my veins to stop the blood flow in a bad way.
New Symptom:
Starting a week ago - I started building several superficial blood clots. Four confirmed in my right bicep, one confirmed in my left bicep, and six to eight 'maybe's' in other places. I'm now on coumadin as well to try to stop the growth. We'll try it for a month or so and then go off and see if I'm ok after that. I did try aspirin on day one of the first suspected clot, but it didn't seem to impact anything other than reduce the visible evidence (swollen, red, warm to the touch area surrounding the lumps).
So, I'm getting what I believe is accurate and appropriate treatment to 'turn off' the signal to my body to clot right now... I'm more worried about what might have helped flipped the switch in the first place.
---------------------------
It makes sense to me that improving methylation process will improve the processing of purines... and while it seems like treating methylation is causing the gout - the truth is that I probably always would have had gout and being a previously poor methylator just probably prevented it from becoming known. Once that process improved it probably simply exposed another concern that wasn't previously obvious.
But as best I can figure - being a poor methylator leads to high homocysteine - and that leads to a higher clotting risk. So being a better methylator reduces homocysteine (mine is much lower than it was when I had the pulmonary embolism)... but am I missing something else in the picture?
My internist (doesn't believe MTHFR even needs treatment) - I had to go back to him because my methylation doctor is 10 hour drive away... and I needed to get diagnosed with the clots to get the coumadin - which required being able to poke my arm and find the lumps under the skin.... he doesn't have any clues other than the fact that .. yes, I'm producing multiple superficial clots. Normally, one at a time would probably get ignored. But five confirmed clots all created in less than a week? With no injury/hormones/iv/travel/or any other risk factor? That's an issue. And while getting multiples within a week without the other factors is exceptionally rare? The standard for treatment is anticoagulants.
Right now, I'm chosing to hide my head in the sand that multiple superficial clots spread over a period of time is a risk factor often associated with cancer. There's nothing that stands out as a possible risk factor for cancer other than my genes... but no actual symptoms I know of that I should be focusing on to screen for cancer. And, technically, my clots haven't been spread over time. They've all shown up within days of each other (so I'm sticking this back on the book shelf until I break out with another batch of clots - which might make me worry a second time).
My specialist (treats methylation issues) doesn't think any of my supplements nor treatment would add to my clotting risk. But then again, he missed the gout connection.
I'm reaching out to others IRL... but I thought I'd ping the great minds on PR... I'm ok with random thoughts/ideas/links to studies...
I'd appreciate any thoughts pro or con around
.... my condition and risk factors for clotting
.... or my treatments/supplements and risk factors for clotting
.... not sure what else... but any suggestions at all would probably be helpful.
Anyway... I've been working with a Doctor for a year and working one getting my methylation process working better. Forgive me for lack of references - my mind/thought process is improving in that I'm able to tie together more details - but tying the details I learn back to the studies I read to get them is still a little beyond the scope of my abilities at this point in time.
No official dx of CFS nor ME - but meet all the ICC criteria. Have been chronically ill for 9 years with two episodes of bed rest and the rest of the time spent working, but 'walking dead' outside of work.
Taking - methylfolate, methylcobalamin, lipsomal vitamin c, ALC, NAC - was taking a B12 complex to get hydroxycobalamin and anenosylcobalamin - but not lately.
Rx - Armour thyroid medicine
Diet: Gluten free/dairy free/low soy ... nothing heavy in saturated fats, nothing greasy/oily/fried.
Alternative treatments: chiropractor, acupuncture
My first symptom might JUST be a signal that my methylation process is working better.
1. Gout
... why I think it's a sign that my methylation process is improving
a. Gout has been rarely found in patients with CFS/ME and/or Methylation defects
b. Gout is caused by purines (found in food) being converted to Uric acid (normal process) - but too much uric acid creates crystals which causes gout
c. The methylation process impacts the processing of purines into uric acid
d. Poor methylators actually tend to do better on high purine foods (still looking into more details here, but per Rich - it might be tied to the fact that purines that aren't broken down get recycled... might be related to some offshoot of that.
e. Since purines aren't getting broken down as well for poor methylators - improving the methylation process means that more purines ARE going to get broken down into Uric acid
f. my gout symptoms didn't appear until AFTER about six months of methylation treatment
g. my diet is NOT contain any foods high in purines - however, I don't know if there was a 'build up' that needs to get processed out... at this point I am treating with A-C carbimide (a high alkaleine mineral) - it handles the pain more effectively than pain killers and doesn't seem to have any negatives that I can find over the basic minor risk factors
2. Blood clots
.... a much more concerning new (er) symptom
History:
I had a pulmonary embolism in 2004 after I'd been on and off (and on again) birth control pills. I've had preventative treatment every time I've had surgery, but not really any other time. I've developed one superficial blood clot after one of my surgeries (at an IV site) and identified as having two risk factors for being at risk for clotting - MTHFR (treating) and Protein C Deficiency (a rare, inheritable, clotting disorder).
FWIW - high homocysteine at the point of the PE directed the doctor to recommend folic acid, b6, b12 (and I didn't know any better about forms of vitamins)... within three months of taking those supplements, I had my first crash.
Protein C Deficiency is inheritable (and believed to have come from my father who died young from blood clots)... and in the clotting cascade, it's the bindings of the c proteins to the Factor V proteins that indicates when the body should STOP producing a clot (i.e., you've sealed the cut, let's stop and not go overboard). Since I don't have enough Protein C being created by my body - once it decides it needs to create a clot - it doesn't stop at the wound site (not that I have any wound sites)... but starts building little forts in my veins to stop the blood flow in a bad way.
New Symptom:
Starting a week ago - I started building several superficial blood clots. Four confirmed in my right bicep, one confirmed in my left bicep, and six to eight 'maybe's' in other places. I'm now on coumadin as well to try to stop the growth. We'll try it for a month or so and then go off and see if I'm ok after that. I did try aspirin on day one of the first suspected clot, but it didn't seem to impact anything other than reduce the visible evidence (swollen, red, warm to the touch area surrounding the lumps).
So, I'm getting what I believe is accurate and appropriate treatment to 'turn off' the signal to my body to clot right now... I'm more worried about what might have helped flipped the switch in the first place.
---------------------------
It makes sense to me that improving methylation process will improve the processing of purines... and while it seems like treating methylation is causing the gout - the truth is that I probably always would have had gout and being a previously poor methylator just probably prevented it from becoming known. Once that process improved it probably simply exposed another concern that wasn't previously obvious.
But as best I can figure - being a poor methylator leads to high homocysteine - and that leads to a higher clotting risk. So being a better methylator reduces homocysteine (mine is much lower than it was when I had the pulmonary embolism)... but am I missing something else in the picture?
My internist (doesn't believe MTHFR even needs treatment) - I had to go back to him because my methylation doctor is 10 hour drive away... and I needed to get diagnosed with the clots to get the coumadin - which required being able to poke my arm and find the lumps under the skin.... he doesn't have any clues other than the fact that .. yes, I'm producing multiple superficial clots. Normally, one at a time would probably get ignored. But five confirmed clots all created in less than a week? With no injury/hormones/iv/travel/or any other risk factor? That's an issue. And while getting multiples within a week without the other factors is exceptionally rare? The standard for treatment is anticoagulants.
Right now, I'm chosing to hide my head in the sand that multiple superficial clots spread over a period of time is a risk factor often associated with cancer. There's nothing that stands out as a possible risk factor for cancer other than my genes... but no actual symptoms I know of that I should be focusing on to screen for cancer. And, technically, my clots haven't been spread over time. They've all shown up within days of each other (so I'm sticking this back on the book shelf until I break out with another batch of clots - which might make me worry a second time).
My specialist (treats methylation issues) doesn't think any of my supplements nor treatment would add to my clotting risk. But then again, he missed the gout connection.
I'm reaching out to others IRL... but I thought I'd ping the great minds on PR... I'm ok with random thoughts/ideas/links to studies...
I'd appreciate any thoughts pro or con around
.... my condition and risk factors for clotting
.... or my treatments/supplements and risk factors for clotting
.... not sure what else... but any suggestions at all would probably be helpful.