I have hated the URL of my blog for many years, so today I changed it. I broke thousands upon thousands of links to my blog. Oh well. Out with the old, in with the new.
My blog went from
http://adrenal-fatigue-nightmare.blogspot.com
To...
*drum roll*
http://danachronicallyliving.blogspot.com/
Much better! I feel like I can breathe again and talk about what I want without that stupid URL causing people to make assumptions about my site. Be sure to update your links/bookmarks!
If your links are broken, simply add danachronicallyliving.blogspot.com to the beginning of any link and it will work.
If you see broken links on the new website because I linked to an old post of mine, please let me know. I don't plan on going post by post fixing these, so as you find them, I'd love to know.
Friday, July 27, 2012
A Storm With a Meaning
There was a crazy storm yesterday in this area earlier in the day. Even though the lightning was so bright and close (I saw a telephone get struck) we got through it without losing power or anything. Then randomly at around 7:30PM, there was a very sudden "out of no where" lightning strike somewhere fairly close because the thunder that came afterward was only a second or 2 later. As the lightning struck, we realized our internet went out... Uh oh. It is not a good sign when that happens. I called up our local ISP and they said there were no reported outages in this area. Uh oh. Again not a good sign. We called later hoping, they just did not get any reports in and once again, no reported outages, but they saw a TON of people in this area were offline. Hmmm that actually gave me hope.
So we scheduled an appointment for a tech to come out today from 2PM onward. It was an on call tech, so they said he operates on 8 hour windows. Most people would be ticked off by this, but I certainly didn't care. It's not like I have a busy life and I'm never home. haha!
So we scheduled an appointment for a tech to come out today from 2PM onward. It was an on call tech, so they said he operates on 8 hour windows. Most people would be ticked off by this, but I certainly didn't care. It's not like I have a busy life and I'm never home. haha!
Thursday, July 26, 2012
When the Protocol or Theory Is More Important
This is going to be a deep post and fair warning, it might be upsetting to some if they can relate to some of the things I'm about to describe. Before I get to the heart of the matter though, I have to give some backstory to give people, who aren't familiar with my story, an understanding of where I am coming from.
As I approach the 5 year anniversary of this blog and 12 year anniversary of suffering from POTS, I look back and admit I have not made nearly as much progress with my health as I had hoped.
So I ask myself, what went wrong?
Well I realize I was pretty naive and misinformed when I started tackling my health problems. I thought I knew it all. I thought it was going to be simple and that as long as I "stuck with it" I'd eventually find my magic bullet.
Is there a magic bullet? At this point in time, I really do not know. What I do know is that for my POTS, it is not a simple thing fixed with some supplements, salt and drinking more water. With everything I have tried up until this point, I'm operating on the premise that there really may be no cure for me. If you thought for a second that I have "given up", then please continue reading this post because you really need to hear what's on my heart.
Because POTS is simply a collection of symptoms, your POTS and my POTS may be caused by completely opposite and different things. Some people have high BP with their POTS, not low BP; some have normal or high norepinephrine levels. Others have low nitric oxide, but high nitric oxide has been seen too. Each end of the spectrum is seen in POTS. I don't know your history, genetics and other environmental, physical and developmental factors that may be playing a role in your POTS and you do not know mine. What holds true for me, may actually make another POTSy very sick. What doesn't work for me, may actually work for you.This is why you need to see a doctor and get a complete work up.
With that backstory, now it's time to get into the deeper aspect of this post.
"You did not do it right. You did not use the right supplements, use the right dosage, the right brand or wait long enough for the protocol to work."
How many of you have had someone attack and blame you for being sick?
I could go on and on with some of the things people have said to me over the years, but the details do not matter. I have been told these things by fellow POTSies, CFS sufferers and other chronically ill people. I'm not even mad at any of these people. I feel more sadness because I wish they could understand what this type of thinking does to the people they are pointing the finger at and what it does to others reading these words.
It's like a plague infects the groups and the people within it. This idea that if it did not work for you, then you did it wrong, begins to resonate and take over and others adopt these same attitudes. New members see this and begin to take on the same attitudes and before you know it, the group simply becomes a place to follow and talk theory. "Theoretically you should do this". I have been told so many times "this is the fix" "just do this". Well I still have POTS, so those theories did not work for me... What am I supposed to do? Lie that I'm better?
As I started my health journey, I would subscribe to whatever new theory I had stumbled upon that day, week or month. I would read as much as possible becoming completely obsessed with it and reading website after website about the technicalities and science behind "how it worked". Once I got a good grasp of it, I was either convinced this was the "next thing" or I would decide it wasn't worth pursue any further. More often than not, I'd completely dive right in and become dedicated to the protocol in hopes that "this was the one". Remember at this time of my life, I thought this was just a matter of taking the right supplement.
My husband and I took this stuff extremely seriously. We followed the protocols exactly, following the DO's and DONT's precisely. It did not matter what it was, we did it because the protocol said so. We bought the best supplements, vitamins, minerals, herbs and followed things exactly. We both kept journals or made note of when we started a supplement. We started things one at a time and refrained from changing things on a whim. We went to the best of the best doctors, ordered all the right tests and did everything perfectly. We wastefully spent thousands and thousands of dollars.
I became personally invested in these protocols. I acted as if I was in a competitive sport cheering for my team. Rolling my eyes and scoffing at anyone who might suggest it was not a good idea or had an opposing idea or suggestion. After all, I could not let anyone attack MY protocol. How dare someone insult ME like that...
Come on! I am being real. I know some of you right now feel this way about a theory. There are so many nowadays, I cannot even keep track of them all.
Well I am done with this type of thinking. The person I used to be is dead now (figuratively speaking here). I was Born Again on June 16 and God has been changing me over the past few weeks. I am no longer that girl anymore. I was trying to fight it, but I am done fighting. I had made my health my God. I had made the theories, my God. I had made everything and anything my God except for the real God. WOW!
The cold hard truth is that 5 years later, after trying hundreds of different supplements and protocols, I still have POTS. There is nothing I have done that has cured it. That is a fact.
To make matters worse, with our experimentation my husband caused irreparable damage with a supplement and now has permanent hearing loss with hyperacusis. He has to walk around the house with ear plugs in. I can't sing around him. I can't do the dishes near him. Going to the store is excruciating for him. We got nothing good out of any of this stuff, so I'm done. No more paper theories.
I find genetics fascinating and I will likely make some posts about neat things I find out. However as far as nutrigenomics goes I just cannot do it anymore. I originally came here to help people, but I do not have the answers. All I can tell you is what did not work for POTS. That's everything I've written about and tried over the past 5 years....
Do not let any protocol, doctor or theory become what you live for or live by. Come up for air and look around. If you aren't getting better, please be able to admit this to yourself. Don't let someone tell you you just did not do it quite right or did not take the right brand of supplement. This keeps people chained down for years. I know people who spent years doing various supps, hormone replacement or mercury detoxing with tiny amounts of success. Many of them are still doing it looking for the right dose, the right combo, the right... "This will be my lucky break".
The defend-the-protocol-at-all costs thinking is so detrimental. Watch yourself from slipping into this thinking. It is so common that people do not even know they are doing it. Take a look around and be real with yourself. Are YOU doing it now? If someone came up to you right now and said your supplement regimen or methylation theory did not work for them, would you feel offended? Would you tell the person they did it wrong? Would you listen to them at all?
Do not let your poor health become the only thing you live for. I suggest taking a look at Dan Mohler. There is so much more to live for!
I love all of you. I have met amazing people in the past 5 years. But I have lost my desire to keep discussing these theories and concepts that never pan out. Just talking about it and theorizing and pretending we have any idea is not fun anymore.
I will continue to make videos on my Youtube channel because having POTS stinks. I will still be looking at my genetics as well.
No more theorycrafting from me. I'll probably start writing about my spiritual journey and just my day to day life. This is a new chapter in my life, no longer focused on stupid theories, supplements and health.
God bless!
As I approach the 5 year anniversary of this blog and 12 year anniversary of suffering from POTS, I look back and admit I have not made nearly as much progress with my health as I had hoped.
So I ask myself, what went wrong?
Well I realize I was pretty naive and misinformed when I started tackling my health problems. I thought I knew it all. I thought it was going to be simple and that as long as I "stuck with it" I'd eventually find my magic bullet.
Is there a magic bullet? At this point in time, I really do not know. What I do know is that for my POTS, it is not a simple thing fixed with some supplements, salt and drinking more water. With everything I have tried up until this point, I'm operating on the premise that there really may be no cure for me. If you thought for a second that I have "given up", then please continue reading this post because you really need to hear what's on my heart.
Because POTS is simply a collection of symptoms, your POTS and my POTS may be caused by completely opposite and different things. Some people have high BP with their POTS, not low BP; some have normal or high norepinephrine levels. Others have low nitric oxide, but high nitric oxide has been seen too. Each end of the spectrum is seen in POTS. I don't know your history, genetics and other environmental, physical and developmental factors that may be playing a role in your POTS and you do not know mine. What holds true for me, may actually make another POTSy very sick. What doesn't work for me, may actually work for you.This is why you need to see a doctor and get a complete work up.
With that backstory, now it's time to get into the deeper aspect of this post.
"You did not do it right. You did not use the right supplements, use the right dosage, the right brand or wait long enough for the protocol to work."
How many of you have had someone attack and blame you for being sick?
I could go on and on with some of the things people have said to me over the years, but the details do not matter. I have been told these things by fellow POTSies, CFS sufferers and other chronically ill people. I'm not even mad at any of these people. I feel more sadness because I wish they could understand what this type of thinking does to the people they are pointing the finger at and what it does to others reading these words.
It's like a plague infects the groups and the people within it. This idea that if it did not work for you, then you did it wrong, begins to resonate and take over and others adopt these same attitudes. New members see this and begin to take on the same attitudes and before you know it, the group simply becomes a place to follow and talk theory. "Theoretically you should do this". I have been told so many times "this is the fix" "just do this". Well I still have POTS, so those theories did not work for me... What am I supposed to do? Lie that I'm better?
When the Protocol or Theory Becomes More Important
This section might be a little hard for some of you to swallow. Understand, everything I say is out of love. I want people to break free from these chains we have placed on ourselves. I'm reflecting on my own experience.As I started my health journey, I would subscribe to whatever new theory I had stumbled upon that day, week or month. I would read as much as possible becoming completely obsessed with it and reading website after website about the technicalities and science behind "how it worked". Once I got a good grasp of it, I was either convinced this was the "next thing" or I would decide it wasn't worth pursue any further. More often than not, I'd completely dive right in and become dedicated to the protocol in hopes that "this was the one". Remember at this time of my life, I thought this was just a matter of taking the right supplement.
My husband and I took this stuff extremely seriously. We followed the protocols exactly, following the DO's and DONT's precisely. It did not matter what it was, we did it because the protocol said so. We bought the best supplements, vitamins, minerals, herbs and followed things exactly. We both kept journals or made note of when we started a supplement. We started things one at a time and refrained from changing things on a whim. We went to the best of the best doctors, ordered all the right tests and did everything perfectly. We wastefully spent thousands and thousands of dollars.
I became personally invested in these protocols. I acted as if I was in a competitive sport cheering for my team. Rolling my eyes and scoffing at anyone who might suggest it was not a good idea or had an opposing idea or suggestion. After all, I could not let anyone attack MY protocol. How dare someone insult ME like that...
Come on! I am being real. I know some of you right now feel this way about a theory. There are so many nowadays, I cannot even keep track of them all.
Well I am done with this type of thinking. The person I used to be is dead now (figuratively speaking here). I was Born Again on June 16 and God has been changing me over the past few weeks. I am no longer that girl anymore. I was trying to fight it, but I am done fighting. I had made my health my God. I had made the theories, my God. I had made everything and anything my God except for the real God. WOW!
The cold hard truth is that 5 years later, after trying hundreds of different supplements and protocols, I still have POTS. There is nothing I have done that has cured it. That is a fact.
To make matters worse, with our experimentation my husband caused irreparable damage with a supplement and now has permanent hearing loss with hyperacusis. He has to walk around the house with ear plugs in. I can't sing around him. I can't do the dishes near him. Going to the store is excruciating for him. We got nothing good out of any of this stuff, so I'm done. No more paper theories.
I find genetics fascinating and I will likely make some posts about neat things I find out. However as far as nutrigenomics goes I just cannot do it anymore. I originally came here to help people, but I do not have the answers. All I can tell you is what did not work for POTS. That's everything I've written about and tried over the past 5 years....
Take Home Points
Do not let any protocol, doctor or theory become what you live for or live by. Come up for air and look around. If you aren't getting better, please be able to admit this to yourself. Don't let someone tell you you just did not do it quite right or did not take the right brand of supplement. This keeps people chained down for years. I know people who spent years doing various supps, hormone replacement or mercury detoxing with tiny amounts of success. Many of them are still doing it looking for the right dose, the right combo, the right... "This will be my lucky break".
The defend-the-protocol-at-all costs thinking is so detrimental. Watch yourself from slipping into this thinking. It is so common that people do not even know they are doing it. Take a look around and be real with yourself. Are YOU doing it now? If someone came up to you right now and said your supplement regimen or methylation theory did not work for them, would you feel offended? Would you tell the person they did it wrong? Would you listen to them at all?
Do not let your poor health become the only thing you live for. I suggest taking a look at Dan Mohler. There is so much more to live for!
I love all of you. I have met amazing people in the past 5 years. But I have lost my desire to keep discussing these theories and concepts that never pan out. Just talking about it and theorizing and pretending we have any idea is not fun anymore.
I will continue to make videos on my Youtube channel because having POTS stinks. I will still be looking at my genetics as well.
No more theorycrafting from me. I'll probably start writing about my spiritual journey and just my day to day life. This is a new chapter in my life, no longer focused on stupid theories, supplements and health.
God bless!
Saturday, July 14, 2012
Graphs of Heart Rates During Tilt Table Tests
I wanted to share with all of you a graph of my vitals during my TTT's. I'm not sure how to get BP's to work, but if I do, then I'll post those alongside the HR's so you can see how that correlates (or does not correlate in my case...hehe).
Cleveland Clinic
UPMC Passavant
At the place where I have marked Nitro, they lowered me back down briefly and gave me half a sublingual nitro pill. I thought it was going to kill me. I will never ever let any doctor give me that drug again! Ugh!
Cleveland Clinic
UPMC Passavant
At the place where I have marked Nitro, they lowered me back down briefly and gave me half a sublingual nitro pill. I thought it was going to kill me. I will never ever let any doctor give me that drug again! Ugh!
The Emotional Swings Can Be Hard
I don't normally write blog posts about my emotions, but today I wanted to explain the mood swings I get at times. I have been so agitated, pissed off, quick to anger. It is scary because when I'm like this, I tend to do really stupid, impulsive things. Days like today is when I'd delete my blog, facebook page or delete every cover video I've made on Youtube. It's scary. I also purposely try to offend people and say things that will make people mad at me. I actually feed off of the negative energy. That filter we all have on our brains, it sometimes stops working for me and it's exceedingly difficult to get it to turn back on.
Saturday, July 7, 2012
Heat Intolerance: It's Too Darn Hot!
I made a video talking about some of my struggles with it.
Admittedly I was doing a lot better in this video I made 8 days ago. Things got bad really quickly for me.
Admittedly I was doing a lot better in this video I made 8 days ago. Things got bad really quickly for me.
23andme Data: GEDmatch's New Rare SNP Finder
Thursday, June 14, 2012
[Video] Evanescence-My Heart Is Broken (Vocal Cover)
For the first time I did an actual video of me singing the song. This is what I do outside of looking at health stuff...haha Enjoy!
Thursday, May 31, 2012
Tuesday, May 29, 2012
Sunday, May 27, 2012
These Symptoms Are the Reason I Made This Blog
This video contains the very reasons why I started this blog back in 2007. Here I am in 2012 and still suffering from the same issues. Everything I've done in the past 5 years hasn't helped me much. haha!
Heat intolerance and rapid heart rate upon standing. This is my life in the summer.
Heat intolerance and rapid heart rate upon standing. This is my life in the summer.
Friday, May 18, 2012
Quercetin Decreases COMT Activity
I found this interesting tidbit of information on Dr. Ben Lynch's facebook page today.
Huh, very very interesting. He references this study on Pubmed as his source of information.
If some of you may remember, I used to take quercetin during chelation rounds because of the hives and itchiness I used to get. It seemed to help keep me from getting hives, but as soon as I did, it was worthless.
I wonder if it was in fact doing more harm than good. You figure, while chelating, you probably don't want to slow down your methylation system any more...Nor do you want to be dumping more dopamine, NE and epinephrine into your already weakened body.
This is why I am very happy to have tested for these SNP's. It helps me to get a better understanding of what is good for my unique individual body. I still don't think it's the CAUSE of my problems, but it does help me understand why I react to the things I do and why I tend to be "different" than many people in the chronic illness community.
| Quercetin is a potent inhibitor of COMT. Ouch for those with COMT mutations. - Dr Lynch |
Huh, very very interesting. He references this study on Pubmed as his source of information.
If some of you may remember, I used to take quercetin during chelation rounds because of the hives and itchiness I used to get. It seemed to help keep me from getting hives, but as soon as I did, it was worthless.
I wonder if it was in fact doing more harm than good. You figure, while chelating, you probably don't want to slow down your methylation system any more...Nor do you want to be dumping more dopamine, NE and epinephrine into your already weakened body.
This is why I am very happy to have tested for these SNP's. It helps me to get a better understanding of what is good for my unique individual body. I still don't think it's the CAUSE of my problems, but it does help me understand why I react to the things I do and why I tend to be "different" than many people in the chronic illness community.
Wednesday, May 16, 2012
Determining Your Yasko Methylation Results from 23andme Data
I no longer subscribe to this stuff, so everything has been deleted from my blog. Take care. If you want to know what I am doing now, then please see this video.
Methylation SNP's and other 23andme Genetic Results
Since getting my results back from 23andme, I have been digging into my results looking for some clues or some ideas or things to look out for. One of the things that interested me were Dr. Yasko's methylation SNP's. Now that the cost of genetic testing is coming down each year, its popularity is increasing in the chronic illness communities.Do the answers to our chronic health problems, lie within our genetics?
Friday, April 20, 2012
[Video] Chronic Illness: The Ways It Changes Us
Here's the next video on my health channel. What I love about making videos is you can finally see my real personality. :)
Tuesday, April 3, 2012
**New VIDEO**New Heart Rate Monitor Watch and My Garden!
I made a new video showing off my new watch! This video also demonstrates what my POTS is like for me and I gave you a nice little tour through my herb "garden" and flowers. :) Enjoy!
Be sure to subscribe to my youtube channel for more video updates. I'm hoping to make this channel more personal. I find making videos has been a nice release valve for me! It is much more personable than writing blog posts and you can see my goofiness and craziness come through too. haha!
Be sure to subscribe to my youtube channel for more video updates. I'm hoping to make this channel more personal. I find making videos has been a nice release valve for me! It is much more personable than writing blog posts and you can see my goofiness and craziness come through too. haha!
Monday, April 2, 2012
I have HLA-B*1502 (23andme genetic testing)?
Update:
After some more research, I actually believe that 23andme does not call this SNP properly and/or it does not actually correspond with HLA-B 1502. I guess I'd have to get tested elsewhere to know for sure, (but I have no intentions of doing that).
The reason why I say this is because at one point in time Gedmatch.com had a rareSNP finder and this one did not come up as "rare" for me. I believe it showed frequencies all the way up to 20%. If more than 20% of people on Gedmatch shares this genotype, then it is quite common and could not possibly be accurate.
So I just wanted to throw that out there. All of my East Asian fell off of my Ancestry Composition when they updated it. So personally I think this SNP is not accurate and I would not be worried. If you are worried, then get tested at a lab for HLA-B 1502.
-------------------------
I kind of left all of you hanging there with my last post. I decided instead of taking another week to get all of my research and thoughts together, I'd just let you know what I found out with this 1 particular genotype.
Genetics is very confusing and I don't even partially understand it, but as you all should know, there are very important markers within our genome for our immune system. These are called HLA or human leukocyte antigen. These are located on Chromosome 6 and are responsible for the way our immune system responds.
When I ordered 23andme genetic testing, I was looking for anything at all that might give me some insight into my health. Well I think as far as discoveries go, I probably hit the jackpot. When someone opens up their genetic information, most people want to be warned about potentially harmful conditions or to alert them of some sort of disease they are carry etc.
After I looked in the initial reports provided by 23andme, I wanted to go even further. I downloaded my genetic raw data to my computer and loaded it into a program called Promethease. This program is free (or you can pay a cheap $2 to speed up the test) and it will alert you to any mutations or genotypes they feel are important.
In the "Bad section" I found something that had an extremely low frequency, high magnitude and seemed like it should have had a huge sign that said, HOLY SH*T READ ME, but it did not. Thankfully I was paying very close attention...
According to this test I carry what is called HLA-B*1502. People with this allele have a 1000 fold increased risk of developing Stevens Johnson Syndrome (remember me talking about this while chelating?) when taking carbamazepine, phenytoin and fosphenytoin. These are anti-epileptics drugs, but they also have other uses. Here's where it gets really weird though. If you look up any information on this it only talks about this occurring in Asians. Well I'm not Asian, so I was pretty perplexed by this. The frequency for this allele to occur in a Caucasian is 0.0-0.1%. Yes that is 0.1%.
You can watch a short video from the FDA alerting people of this.
On 23andme I made a thread about my finding and some were suggesting that since I wasn't an Asian that this did not apply to me. I challenged this theory. No Caucasians were ever seen with this allele in any literature (Study 1, Study 2, Study 3 or Study 4) Therefore one cannot make the assumption that it would be safe to take these drugs. The only thing these studies were trying to show were that there are other HLA-B genotypes which have a higher prevalence in the Caucasian population which were causing CBZ-SJS.
Out of curiosity, I emailed one of the authors of the study and asked him if me (a Caucasian) would have the same risk as an Asian and he said Yes. I should avoid both carbamazepine and phenytoin.
Are there any other Caucasians out there with HLA-B*1502? Part of me wants to get this checked through Quest Diagnostic or Lab Corp to confirm I do in fact have this...When you come across something like this, I need further proof. There is an entry in snpedia that testing for this may not be accurate because it is phased data.
The defining SNP's (said "snips") are:
rs3909184 GG
rs2844682 AA
The first one GG is common. It is the second one at AA that is rare in Europeans. You need to have both of these in order to have HLA-B*1502. This association with HLA-B*1502, CBZ and Stevens Johnson Syndrome is well documented. If for some reason I would have ever needed an anti-epileptic, I never would have refused either of these two drugs.
Stevens Johnson Syndrome is serious business and it either kills you or leaves you in so much pain with health problems for the rest of your life. Some of the saddest videos I've ever seen on Youtube are of those people with Stevens Johnson Syndrome. They will break your heart...
After some more research, I actually believe that 23andme does not call this SNP properly and/or it does not actually correspond with HLA-B 1502. I guess I'd have to get tested elsewhere to know for sure, (but I have no intentions of doing that).
The reason why I say this is because at one point in time Gedmatch.com had a rareSNP finder and this one did not come up as "rare" for me. I believe it showed frequencies all the way up to 20%. If more than 20% of people on Gedmatch shares this genotype, then it is quite common and could not possibly be accurate.
So I just wanted to throw that out there. All of my East Asian fell off of my Ancestry Composition when they updated it. So personally I think this SNP is not accurate and I would not be worried. If you are worried, then get tested at a lab for HLA-B 1502.
-------------------------
I kind of left all of you hanging there with my last post. I decided instead of taking another week to get all of my research and thoughts together, I'd just let you know what I found out with this 1 particular genotype.
Genetics is very confusing and I don't even partially understand it, but as you all should know, there are very important markers within our genome for our immune system. These are called HLA or human leukocyte antigen. These are located on Chromosome 6 and are responsible for the way our immune system responds.
When I ordered 23andme genetic testing, I was looking for anything at all that might give me some insight into my health. Well I think as far as discoveries go, I probably hit the jackpot. When someone opens up their genetic information, most people want to be warned about potentially harmful conditions or to alert them of some sort of disease they are carry etc.
After I looked in the initial reports provided by 23andme, I wanted to go even further. I downloaded my genetic raw data to my computer and loaded it into a program called Promethease. This program is free (or you can pay a cheap $2 to speed up the test) and it will alert you to any mutations or genotypes they feel are important.
In the "Bad section" I found something that had an extremely low frequency, high magnitude and seemed like it should have had a huge sign that said, HOLY SH*T READ ME, but it did not. Thankfully I was paying very close attention...
According to this test I carry what is called HLA-B*1502. People with this allele have a 1000 fold increased risk of developing Stevens Johnson Syndrome (remember me talking about this while chelating?) when taking carbamazepine, phenytoin and fosphenytoin. These are anti-epileptics drugs, but they also have other uses. Here's where it gets really weird though. If you look up any information on this it only talks about this occurring in Asians. Well I'm not Asian, so I was pretty perplexed by this. The frequency for this allele to occur in a Caucasian is 0.0-0.1%. Yes that is 0.1%.
You can watch a short video from the FDA alerting people of this.
On 23andme I made a thread about my finding and some were suggesting that since I wasn't an Asian that this did not apply to me. I challenged this theory. No Caucasians were ever seen with this allele in any literature (Study 1, Study 2, Study 3 or Study 4) Therefore one cannot make the assumption that it would be safe to take these drugs. The only thing these studies were trying to show were that there are other HLA-B genotypes which have a higher prevalence in the Caucasian population which were causing CBZ-SJS.
Out of curiosity, I emailed one of the authors of the study and asked him if me (a Caucasian) would have the same risk as an Asian and he said Yes. I should avoid both carbamazepine and phenytoin.
Are there any other Caucasians out there with HLA-B*1502? Part of me wants to get this checked through Quest Diagnostic or Lab Corp to confirm I do in fact have this...When you come across something like this, I need further proof. There is an entry in snpedia that testing for this may not be accurate because it is phased data.
The defining SNP's (said "snips") are:
rs3909184 GG
rs2844682 AA
The first one GG is common. It is the second one at AA that is rare in Europeans. You need to have both of these in order to have HLA-B*1502. This association with HLA-B*1502, CBZ and Stevens Johnson Syndrome is well documented. If for some reason I would have ever needed an anti-epileptic, I never would have refused either of these two drugs.
Stevens Johnson Syndrome is serious business and it either kills you or leaves you in so much pain with health problems for the rest of your life. Some of the saddest videos I've ever seen on Youtube are of those people with Stevens Johnson Syndrome. They will break your heart...
Wednesday, March 28, 2012
23andme Genetic Results Are In
I plan on making a huge report of everything I found out both on my blog and in a youtube video. I found out some unbelievable things which I cannot wait to report to all of you.
Was it worth it? Absolutely. It might have saved my life....
Was it worth it? Absolutely. It might have saved my life....
Saturday, March 24, 2012
New Health Youtube Channel
I finally decided to start a new youtube channel talking about POTS and other health related topics. This is my introduction video about POTS.
I plan on making videos showing me struggling with POTS. I also plan on talking about what I've tried over the years too.
I plan on making videos showing me struggling with POTS. I also plan on talking about what I've tried over the years too.
Thursday, March 22, 2012
Waiting on Echo and Holter Results
I decided I'd head up to the hospital medical records and request the Echocardiogram and Holter results ahead of time. They will be mailing them out to me when they get them, so now I won't have to worry about bugging the cardiologist's office.
Ever since Monday, I have been feeling terrible. I feel like a bus has hit me and I cannot get enough rest. Monday was the day I wore the holter monitor and I beat the hell out of myself to get good readings on the monitor. At this point, I'm not sure why I feel so terrible still. Part of me thinks the strep is coming back. I have a few new red spots on my ankles and the old nodules are starting to hurt again. It is not severe, but this makes me worried.
In unrelated things. I read on a health forum of some woman who had major improvements in her POTS when she took the fat soluble form of B1. I happen to have that in my house ( I tried it a few years ago) and decided to give it another go. I couldn't remember if anything bad had happened to me when I took it, so I just thought I'd see. Sure enough, it took 3 pills (1 a day) and the PVC's are back... I cannot even make this stuff up any more. I do not understand why my body immediately decides that all B vitamins are bad for me. So I will probably stop taking it and move on.
Ever since Monday, I have been feeling terrible. I feel like a bus has hit me and I cannot get enough rest. Monday was the day I wore the holter monitor and I beat the hell out of myself to get good readings on the monitor. At this point, I'm not sure why I feel so terrible still. Part of me thinks the strep is coming back. I have a few new red spots on my ankles and the old nodules are starting to hurt again. It is not severe, but this makes me worried.
In unrelated things. I read on a health forum of some woman who had major improvements in her POTS when she took the fat soluble form of B1. I happen to have that in my house ( I tried it a few years ago) and decided to give it another go. I couldn't remember if anything bad had happened to me when I took it, so I just thought I'd see. Sure enough, it took 3 pills (1 a day) and the PVC's are back... I cannot even make this stuff up any more. I do not understand why my body immediately decides that all B vitamins are bad for me. So I will probably stop taking it and move on.
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