I don't think I've ever posted something like this before on my blog. I know my viewership has gone done a lot since I've change the format of things around here, but I'm hoping maybe a few of you can help out.
My nephew, Noah is in Cub scouts and I sadly cannot afford a single thing on this website to help him out. I'd be ecstatic if any of you could buy one of the tasty food items to help him out. I've been drooling over the chocolate covered pretzels, but those aren't gluten free...lol Things are a bit pricey, but most of it goes directly back to the Cub Scout Troop, so you are mostly just making a donation and getting a food item in exchange. ;)
Both my sister and I have had health problems since a young age. Only 4 months after giving birth to Noah, my sister began experiencing severe headaches. 10 months later, she was diagnosed with a malignant brain tumor at age 25 and the prognosis was bad. My nephew was only 1 years old at the time...I thought my nephew was not going to have a mom. It was really that scary, but she fought on and praise God the surgery was successful and she is still with us today, more than 5 years later!However, to say that things have been rough for both of them is an understatement. She is a single mom, living with my parents and could use your help!
You have to go through this link in order for my nephew to get credit. At the top of the page it should say, "You are supporting: Scout Noah D". If anyone is having trouble with this, please comment below and I can try to help out so we make sure he gets credit for any sale. If you can't afford anything, then that's totally ok! Try to pass the link along to a friend. Cub Scout stuff can get expensive, but it's such a great way for him to meet other kids and do normal boy things! :)
Here's the long link for copy/pasting purposes.
http://www.trails-end.com/shop/scouts/email_referral.jsp?id=28630577
Again, I don't normally flat out ask for stuff like this, but I want to help my sister out! Thanks everyone.
As for me, I'm currently writing up a big blog post. Not sure if I'll have the courage to actually publish it, but we will see. It is extremely personal and will be a shocker to most of my readers.
Monday, September 17, 2012
Thursday, August 9, 2012
23andMe $50 Off Coupon Code (Expires Aug. 12)
I told people I'd let them know if 23andme ever did a sale, so as promised here we go!! Today I got an email giving $50 off, so that makes the kit out to $249 plus shipping. This code expires 11:59PM PDT, Sunday August 12, 2012.
The coupon code is:
There is no limit to the number of times the code can be used, so please feel free to pass this along to your own families, friends, co-workers. The more people we get tested at 23andme the more potential cousins we all get, so it's a win win for all of us!
Also this actually isn't too bad of a deal at all. It will only end up being about $40 more than what I paid when they used to do the $99 plus monthly subscription fee. In the long run, that's pretty negligible, so it's an excellent time to test family members we have all been putting off.
23andme was a Christmas gift from my mom (I asked her for it) and it has been really good for me. Using the different 3rd party tools available, it has helped me get some insight in my chronic health issues.
The coupon code is:
| VMQ6KG |
There is no limit to the number of times the code can be used, so please feel free to pass this along to your own families, friends, co-workers. The more people we get tested at 23andme the more potential cousins we all get, so it's a win win for all of us!
Also this actually isn't too bad of a deal at all. It will only end up being about $40 more than what I paid when they used to do the $99 plus monthly subscription fee. In the long run, that's pretty negligible, so it's an excellent time to test family members we have all been putting off.
23andme was a Christmas gift from my mom (I asked her for it) and it has been really good for me. Using the different 3rd party tools available, it has helped me get some insight in my chronic health issues.
Monday, August 6, 2012
Getting Our House Ready
For a healthy couple, getting a house ready to sell is a lot of work. It involves a lot of lifting, fixing, cleaning and going through stuff to toss out.
For a chronically ill couple, getting a house ready to sell is nearly impossible. We wake up feeling tired, nauseous, weak and plain terrible and we didn't even do anything the day before.
There are things that I should have done about 5 years ago, but my poor health has kept me from doing it. I never painted the hallway or the landing at the top of the stairs. Then there's the trim my lovely Vegas has taken his claws to that needs completely repaired. Then the overgrown shrubs, trees and weeds outside. I can't even begin to think about how that is going to get done.
These are things most normal couples take for granted. They can just go outside and do a nice day of hardwork, feel a little tired, come in, make dinner and feel happy about their accomplishment. My husband and I on the other hand, we take 2 steps outside and immediately give up. He feels dizzy, weak and my heart rate is 170. For years there was no way for us to even cut our grass so we had to hire a company to do it for us. Now with money in the negative, this has to come to an end.
We have to move, but how do you move when you feel too sick to move? Catch 22.
For a chronically ill couple, getting a house ready to sell is nearly impossible. We wake up feeling tired, nauseous, weak and plain terrible and we didn't even do anything the day before.
There are things that I should have done about 5 years ago, but my poor health has kept me from doing it. I never painted the hallway or the landing at the top of the stairs. Then there's the trim my lovely Vegas has taken his claws to that needs completely repaired. Then the overgrown shrubs, trees and weeds outside. I can't even begin to think about how that is going to get done.
These are things most normal couples take for granted. They can just go outside and do a nice day of hardwork, feel a little tired, come in, make dinner and feel happy about their accomplishment. My husband and I on the other hand, we take 2 steps outside and immediately give up. He feels dizzy, weak and my heart rate is 170. For years there was no way for us to even cut our grass so we had to hire a company to do it for us. Now with money in the negative, this has to come to an end.
We have to move, but how do you move when you feel too sick to move? Catch 22.
Thursday, August 2, 2012
When Things Don't Go As Expected
On Monday morning I had to get up early and go to my cardiologist for a 3 month check up to see how I was doing.
I was only running on a few hours of sleep because I've been staying up later and later and later at night. This is just something I have always done. I think because I usually feel better at night.
Well I was in the waiting room when my sister text'd me that my aunt died suddenly sometime earlier this morning.... Ugh. My aunt was only 65 years and died from sudden cardiac arrest. Meanwhile I'm sitting in the cardiologist's waiting room.
I talked to her on the phone probably about a year ago because she started to get a rapid heart rates, which I believe was SVT and Afib. These types of arrhythmia are dangerous for this very reason. It can send you into cardiac arrest... My high heart rates are sinus tachycardia which docs say is not serious.
I don't really have too much to say about it. It is very sad that she died and it was so sudden. With the weather being so hot though, I am unable to travel down to her funeral.
My uncle died suddenly from a heart attack many years ago. It really shook the family much like I think her death will too. She was a very caring, laid back, easy going person. She will definitely be missed!
Rest in Peace.
Portsmouth, VA - Ida Marie Hummel, 65, died July 30, 2012. A native of Pennsylvania, she was predeceased by her husband, Michael Donald Hummel; sister, Mary Louise Huber; and brother, the Rev. John R. Huber. Mrs. Hummel was a retired Navy Chief and Vietnam veteran. She later worked at Maryview Medical Center, Portsmouth General Hospital and the Naval Medical Center, Portsmouth. She was a member of St. Paul's Catholic Church.
A devoted mother and grandmother, she is survived by two sons, Michael Hummel and wife Carolina and John Hummel and wife Alisha; one sister, Rita Dobson and husband Gary; three brothers, Lawrence J. Huber and wife Rose Marie, Thomas R. Huber and wife Karen, and Robert C. Huber and wife Carol; and four grandchildren, Isabella, Madison, Ellie-Anna and, Annie Hughes.
A funeral service will be held on Saturday, Aug. 4, at 1 p.m. in St. Paul's Catholic Church by the Rev. Christopher Hess. The family will receive friends at Sturtevant Funeral Home, Portsmouth Blvd. Chapel on Friday from 7-8:30 p.m. www.SturtevantFuneralHome.com
I was only running on a few hours of sleep because I've been staying up later and later and later at night. This is just something I have always done. I think because I usually feel better at night.
Well I was in the waiting room when my sister text'd me that my aunt died suddenly sometime earlier this morning.... Ugh. My aunt was only 65 years and died from sudden cardiac arrest. Meanwhile I'm sitting in the cardiologist's waiting room.
I talked to her on the phone probably about a year ago because she started to get a rapid heart rates, which I believe was SVT and Afib. These types of arrhythmia are dangerous for this very reason. It can send you into cardiac arrest... My high heart rates are sinus tachycardia which docs say is not serious.
I don't really have too much to say about it. It is very sad that she died and it was so sudden. With the weather being so hot though, I am unable to travel down to her funeral.
My uncle died suddenly from a heart attack many years ago. It really shook the family much like I think her death will too. She was a very caring, laid back, easy going person. She will definitely be missed!
Rest in Peace.
Portsmouth, VA - Ida Marie Hummel, 65, died July 30, 2012. A native of Pennsylvania, she was predeceased by her husband, Michael Donald Hummel; sister, Mary Louise Huber; and brother, the Rev. John R. Huber. Mrs. Hummel was a retired Navy Chief and Vietnam veteran. She later worked at Maryview Medical Center, Portsmouth General Hospital and the Naval Medical Center, Portsmouth. She was a member of St. Paul's Catholic Church.A devoted mother and grandmother, she is survived by two sons, Michael Hummel and wife Carolina and John Hummel and wife Alisha; one sister, Rita Dobson and husband Gary; three brothers, Lawrence J. Huber and wife Rose Marie, Thomas R. Huber and wife Karen, and Robert C. Huber and wife Carol; and four grandchildren, Isabella, Madison, Ellie-Anna and, Annie Hughes.
A funeral service will be held on Saturday, Aug. 4, at 1 p.m. in St. Paul's Catholic Church by the Rev. Christopher Hess. The family will receive friends at Sturtevant Funeral Home, Portsmouth Blvd. Chapel on Friday from 7-8:30 p.m. www.SturtevantFuneralHome.com
Friday, July 27, 2012
New Blog URL: No More Adrenal Nonsense
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.
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.
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.
Saturday, March 10, 2012
New Cardiologist Was Great!
After a lot of contemplation, my husband and I decided I should make an appointment with a new cardiologist. Even though I started to feel better, my better half convinced me it was worthwhile to just make sure everything was OK. I dug through my records and it's been like 3 years since my last echo, holter and EKG. The first nightmare office cancelled my echocardiogram on me at the last minute which was a blessing in disguise. They wanted me to re-schedule, but I just cancelled everything with their office. I am not about to go back to some lady who had no respect for me at all. It was maddening.
I wasn't expecting much with this new doctor because why in the world would I let myself down again? Well everything went so much better than expected. First off the doctor was male and younger, which sadly I think usually helps me. I think in the very least they feel empathy. I don't normally do so well with women doctors.
I wasn't expecting much with this new doctor because why in the world would I let myself down again? Well everything went so much better than expected. First off the doctor was male and younger, which sadly I think usually helps me. I think in the very least they feel empathy. I don't normally do so well with women doctors.
Tuesday, February 28, 2012
The Tide is Turning!
Finally I am getting better. The swelling and nodules are almost completely gone. There is still some slight discomfort in my ankles, but I think things are getting back to my normal. :)
I don't wish EN onto anyone. It was so excruciating and uncomfortable.
I don't wish EN onto anyone. It was so excruciating and uncomfortable.
Friday, February 3, 2012
Terrible Cardiologist
I have a new doctor of shame to put on my list. She actually outdid the doctor from MedExpress who told me I needed to get a job and that my heart acted up because I needed to do something with my life...LOL If you haven't read that whole story, then be sure to here.
So I went to this doctor as an emergency appointment scheduled by my PCP. I was supposed to have rheumatic fever ruled out and then that was that. Well everything but that happened and I was soo upset I just started crying in the car and also later on at a store. I have never ever cried like that in public. It was a full sobbing and the people there probably thought I was crazy.
This doctor, Dr. Sch****off was the biggest most condescending bitch I have ever seen.
This doctor is a fake nice. Very condescending. She treats you like an idiot and talks down to you as if you were a child. She will throw in little personal attacks in between questions. She doesn't like if you ask questions. She doesn't like if you know about your health problems and have input in your care. She wants you to be stupid, obedient, only listens and worships her. Those of you who have been reading my blog for years know that I refuse to worship doctors. They are normal human beings and don't deserve that sort of treatment.
She may very well find this post and I would say all of this to her face. I had to control myself as to not walk out during the appointment. It was one attack after another and all she cared about was my POTS. I tried to explain that wasn't why I was here and she did not care. It was like I was her new pet project. "Oh a new POTSY" for her to experiment on with medications. Screw that. I will never be seeing this doctor ever again.
During the appointment, she changed her mind about what was causing the leg edema. She also manhandled my legs after I told her to be gentle, which really pissed me off.
First the edema was POTS. Then after I told her it is not seen in POTS she said it was Addison's. After I explained away that, then she said it was the dose of steroids I am taking. I told her that I take the same amount of cortisol that her own body produces on a daily basis, so that is not possible. Then it was the NSAID, but I told her I had not been taking it until after the swelling started.
She tried to blame the leg edema on every single thing possible, but when I gave her information to prove otherwise, she would just move on to another scapegoat.
No EKG was run at all. She listened to my heart for a few seconds and that was it. "I don't hear any rub, so it is not rheumatic fever". If it were any other doctor, I might have believed them, but not from this lady.
I've wasted enough energy on this lady for a lifetime. I won't be getting the echo done there and will just use her for the blood work she ordered and never see her again.
So I went to this doctor as an emergency appointment scheduled by my PCP. I was supposed to have rheumatic fever ruled out and then that was that. Well everything but that happened and I was soo upset I just started crying in the car and also later on at a store. I have never ever cried like that in public. It was a full sobbing and the people there probably thought I was crazy.
This doctor, Dr. Sch****off was the biggest most condescending bitch I have ever seen.
This doctor is a fake nice. Very condescending. She treats you like an idiot and talks down to you as if you were a child. She will throw in little personal attacks in between questions. She doesn't like if you ask questions. She doesn't like if you know about your health problems and have input in your care. She wants you to be stupid, obedient, only listens and worships her. Those of you who have been reading my blog for years know that I refuse to worship doctors. They are normal human beings and don't deserve that sort of treatment.
She may very well find this post and I would say all of this to her face. I had to control myself as to not walk out during the appointment. It was one attack after another and all she cared about was my POTS. I tried to explain that wasn't why I was here and she did not care. It was like I was her new pet project. "Oh a new POTSY" for her to experiment on with medications. Screw that. I will never be seeing this doctor ever again.
During the appointment, she changed her mind about what was causing the leg edema. She also manhandled my legs after I told her to be gentle, which really pissed me off.
First the edema was POTS. Then after I told her it is not seen in POTS she said it was Addison's. After I explained away that, then she said it was the dose of steroids I am taking. I told her that I take the same amount of cortisol that her own body produces on a daily basis, so that is not possible. Then it was the NSAID, but I told her I had not been taking it until after the swelling started.
She tried to blame the leg edema on every single thing possible, but when I gave her information to prove otherwise, she would just move on to another scapegoat.
No EKG was run at all. She listened to my heart for a few seconds and that was it. "I don't hear any rub, so it is not rheumatic fever". If it were any other doctor, I might have believed them, but not from this lady.
I've wasted enough energy on this lady for a lifetime. I won't be getting the echo done there and will just use her for the blood work she ordered and never see her again.
Wednesday, February 1, 2012
Erythema Nodosum: The Journey Continues
Here's the latest pictures of my feet. Check out the swelling! The picture on the left is from 3-4 days ago. The one on the right is from this morning.I called the rheumy and they seemed mad at me because I wasn't taking the NSAID. /sigh so I took it last night and today just to prove to them that the swelling is far beyond just some swelling on the nodules. I actually have full leg edema. I have gained 6 pounds in the past few days from this!
I got all of the labs back and it is quite interesting! I am definitely a weird one and I actually find it hilarious. Labs don't add up to a connective tissue disorder at all. The one thing that I keep coming back to Rheumatic fever and the PCP and her assistant agreed. They are sending me off to a cardiologist tomorrow. She would have had me seen today but I couldn't get in. I guess they will be checking my heart to see if anything shows up. At this point, even if not, I think I want to try some antibiotics and see what happens. I'll be sure to load up on the probiotics of course.
I also have no idea how the hell my CRP and Sed Rate is normal. I am soo inflamed it is not even funny.
ANA Positive 1:320 Speckled
SED Rate 10 (0-20)
CRP 0.1 (0.0-0.7)
ASO 182 (0-168) HIGH This is the strep infection titers, so I definitely had strep in December.
RA <15.0 (0-30) Negative
DNA AB Double 1 (<4) Negative
SM Antibody <1.0 (<1.0) Negative
RNP Antibody <1.0 (<1.0) Negative
C3 Complement 122 (90-180) Normal
C4 Complement 33 (16-47) Normal
CH50 Complement >60 (11-60) HIGH This is low in SLE, Sjogren's etc, so I think I've ruled those out with this result. Can be high in rheumatic fever! Not many conditions make this one high.
Sjogren's Antibodies:
SS-A/Ro AB <1.00 (<1.0) Negative
SS-B/La AB <1.00 (<1.0) Negative
Histone antibodies 1.3 (1.0-1.5=Weak Positive)
Chlamydia Antibodies:
C Pneumon IGM, IGG, IGA All Negative
C Trachomat IGM, IGG, IGA All Negative
C Psittaci IGM, IGG, IGA All Negative
Mycoplasma Antibodies:
Mycoplasma IGG <0.90 Negative
Mycoplasma IGM 176 (<770) Negative
EBV antibodies: These are always high for me because I had EBV when I was 16.
EBV Capsid IGG 3.76 Positive
EBV Nuclear IGG 2.80 Positive
EBV Capsid IGM <0.91 Negative
Acute rheumatic fever can account for both the high ANA and the high CH50. Also I posted on Jan 22, that was getting terrible chest pains and PVC's. I told the PCP this and she said I just have so much going on, that I absolutely need to see the specialists. Wow I couldn't agree with her more. Wish me luck tomorrow at the cardiologists.
I got all of the labs back and it is quite interesting! I am definitely a weird one and I actually find it hilarious. Labs don't add up to a connective tissue disorder at all. The one thing that I keep coming back to Rheumatic fever and the PCP and her assistant agreed. They are sending me off to a cardiologist tomorrow. She would have had me seen today but I couldn't get in. I guess they will be checking my heart to see if anything shows up. At this point, even if not, I think I want to try some antibiotics and see what happens. I'll be sure to load up on the probiotics of course.
I also have no idea how the hell my CRP and Sed Rate is normal. I am soo inflamed it is not even funny.
ANA Positive 1:320 Speckled
SED Rate 10 (0-20)
CRP 0.1 (0.0-0.7)
ASO 182 (0-168) HIGH This is the strep infection titers, so I definitely had strep in December.
RA <15.0 (0-30) Negative
DNA AB Double 1 (<4) Negative
SM Antibody <1.0 (<1.0) Negative
RNP Antibody <1.0 (<1.0) Negative
C3 Complement 122 (90-180) Normal
C4 Complement 33 (16-47) Normal
CH50 Complement >60 (11-60) HIGH This is low in SLE, Sjogren's etc, so I think I've ruled those out with this result. Can be high in rheumatic fever! Not many conditions make this one high.
Sjogren's Antibodies:
SS-A/Ro AB <1.00 (<1.0) Negative
SS-B/La AB <1.00 (<1.0) Negative
Histone antibodies 1.3 (1.0-1.5=Weak Positive)
Chlamydia Antibodies:
C Pneumon IGM, IGG, IGA All Negative
C Trachomat IGM, IGG, IGA All Negative
C Psittaci IGM, IGG, IGA All Negative
Mycoplasma Antibodies:
Mycoplasma IGG <0.90 Negative
Mycoplasma IGM 176 (<770) Negative
EBV antibodies: These are always high for me because I had EBV when I was 16.
EBV Capsid IGG 3.76 Positive
EBV Nuclear IGG 2.80 Positive
EBV Capsid IGM <0.91 Negative
Acute rheumatic fever can account for both the high ANA and the high CH50. Also I posted on Jan 22, that was getting terrible chest pains and PVC's. I told the PCP this and she said I just have so much going on, that I absolutely need to see the specialists. Wow I couldn't agree with her more. Wish me luck tomorrow at the cardiologists.
Sunday, January 22, 2012
Erythema Nodosum More Pics
The main symptoms associated with Erythema Nodosum is pain, swelling, joint pain, an overall sick feeling, pain, pain, pain and more pain. I have not been able to wear shoes for at least a week and have been sporting my lovely slippers everywhere I go. Sleeping is not easy either. If the sheets touch the spots, it hurts like hell.
I have been researching and these painful lumps may very well give me the answers I have been looking for for the past 11 years of my life. I almost feel like crying in a way. Lately my husband and I have been praying a lot for healing, guidance, hope and strength to get through these times. I asked God to show me anything that may help me to find out what is really going on. I kid you not, but just a few days later these bumps showed up. When I realized what they were, it was like a brick of information struck me upside the head (haha). Maybe I won't get all of the answers I am looking for, but it very well is leading me down a new path. For a very long time I have not had any new leads and have been just chugging along doing mostly nothing new.
Tomorrow I may find out what is going on, or not. Two diseases that can cause these bumps are two diseases that can also cause POTS. Coincidence? Maybe, maybe not. For once in the past 3 years I am actually feeling a bit of hope of finding some answers. Then in another 5-6 weeks I will have the genetic test results back as well. It is exciting times for me.
Just to note. My heart is skipping beats left and right and I'm getting a lot of shortness of breath today as well. Not fun.
Saturday, January 21, 2012
Erythema Nodosum: Confirmed
Sunday, January 15, 2012
Erythema Nodosum: Yet another "skin" ailment
Well this is my first health update in a long time, but I feel I need to come out of my break and document this here.
I have developed what I believe is erythema nodosum. Here's the most sensible description I have found on it.
How did all of this come about?
It came out of no where. I am not chelating or do anything special for my health at the moment.
Yesterday morning I woke up with a terrible pain in my ankles and in my wrist. It's been really cold, so I thought that maybe I was shivering in the middle of the night and I had strained a muscle. All day I was thinking, "wow my ankles are killing me", but I didn't even take a good look at them...
Right before bed, they were hurting so bad, I finally had enough of it and took my socks off and saw what looked like bruises. I pushed on them a bit because I'm apparently sadistic and I nearly jump through the ceiling. I ran into the other room to turn the light on to take a closer look. The areas on my feet/ankles that were sore, were bright red, swollen and hot to the touch. My husband immediately thought of gout and I went to bed thinking maybe that was it. I was too tired to do any research.
I woke up and started my journey. I ruled out gout pretty much right away because what I had was symmetrical on both sides of my feet. I had 2 red, swollen, hot, lumps just under the skin on the tops of my feet and on the side near my ankle bone. I also have one on my shin. Gout just does not present itself like that at all.
Eventually after some more reading I found Erythema Nodosum and I believe with great certainty that is exactly what I have now. Why? Who the hell knows? lol This is what happens when your body is falling apart and no one knows what is wrong. You start to manifest more problems as your body desparate tries to communicate to you that something is seriously wrong.
I know something is wrong, but I need help here!
The prognosis for this isn't bad. It's just a lot of pain, swelling and uncomfortable days ahead. Once it is out of the pain stage, these spots will turn dark like a bruise and stay like that for months. It is a slow healing condition and I hope I don't get them again. This is awful!
Some serious conditions can be an underlying result of the EN, so it's important to have everything ruled out and that's why I need to go to the docs for this one.
Causes
Mine will likely turn out to be Epstein Barr virus (because I had a flareup with that nasty bronchitis I had around Christmas) or nothing at all. But I just have to make sure and rule out some of the others like strep, sarcoidosis, lupus or anything else like that. It's never dull!
Erythema nodosum is a type of panniculitis that affects subcutaneous fat in the skin, usually first evident as an outcropping of erythematous nodules that are highly sensitive to touch.1 Most nodules are located symmetrically on the ventral aspect of the lower extremities. (Source)I will be calling the docs tomorrow or Tuesday.. I want to get an official diagnosis and then get the followup labs/xrays done to make sure there aren't any more serious underlying issues.
How did all of this come about?
It came out of no where. I am not chelating or do anything special for my health at the moment.
Yesterday morning I woke up with a terrible pain in my ankles and in my wrist. It's been really cold, so I thought that maybe I was shivering in the middle of the night and I had strained a muscle. All day I was thinking, "wow my ankles are killing me", but I didn't even take a good look at them...
Right before bed, they were hurting so bad, I finally had enough of it and took my socks off and saw what looked like bruises. I pushed on them a bit because I'm apparently sadistic and I nearly jump through the ceiling. I ran into the other room to turn the light on to take a closer look. The areas on my feet/ankles that were sore, were bright red, swollen and hot to the touch. My husband immediately thought of gout and I went to bed thinking maybe that was it. I was too tired to do any research.
I woke up and started my journey. I ruled out gout pretty much right away because what I had was symmetrical on both sides of my feet. I had 2 red, swollen, hot, lumps just under the skin on the tops of my feet and on the side near my ankle bone. I also have one on my shin. Gout just does not present itself like that at all.
Eventually after some more reading I found Erythema Nodosum and I believe with great certainty that is exactly what I have now. Why? Who the hell knows? lol This is what happens when your body is falling apart and no one knows what is wrong. You start to manifest more problems as your body desparate tries to communicate to you that something is seriously wrong.
I know something is wrong, but I need help here!
The prognosis for this isn't bad. It's just a lot of pain, swelling and uncomfortable days ahead. Once it is out of the pain stage, these spots will turn dark like a bruise and stay like that for months. It is a slow healing condition and I hope I don't get them again. This is awful!
Some serious conditions can be an underlying result of the EN, so it's important to have everything ruled out and that's why I need to go to the docs for this one.
Causes
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Tuesday, January 10, 2012
23andMe Genetic Testing
Looking around online, it also tests a lot of Amy Yasko's methylation pathway SNP's as well as DBH SNP for genetic POTS.
Finding out my APO E is well worth the $99 and I'll get so much more out of it.
Thursday, December 15, 2011
Could I get your help? UJAM Singing Contest!
It's been a long time since my last post and it's because I have been busy singing. I am constantly learning new things and trying to challenge myself to sing better and better. POTS certainly sets me back at times because breath control assumes you have a normal functioning autonomic system. hehe!
After a lot of soulsearching, crying and days of feeling lost and hopeless, I have decided that singing is what I need to do with my life. Even if I am not successful and make no money at it, it does not matter. I need to sing because it makes me feel whole and happy.
I have entered a contest and I desparately need your help in order to keep my entry in the Top 10 until February 5th. For this entry I remixed the instrumental, wrote and sang the lyrics.
You can listen to and vote for my song at this link.
http://www.ujam.com/songs/cTzD7kg6ptWk
To vote for it, just click on the Facebook like button on that page. If for some reason you do not have a facebook page, then please consider sharing it on other forums, blogs, on your facebook wall and on twitter. I cannot do this without you guys!
I have almost a full 2 months to keep the competition from taking over my spot. This will not be easy at all, but I have to try to do this. Hans Zimmer and Lorne Balfe, who are both award winning composers, will be judging the entries!
And with all of this singing stuff, I am finally showing my face too. Please check out my video and it's nice to be able to show you a more personable side of me. Text can only do much.
Wednesday, August 10, 2011
Goodbye:Taking a break
I'm taking a break and focusing on other things like singing. I need to just get away from all of this and do something of real value. I will continue to do what I do with my health, but as far as this blog and stuff I'm sick of it all.
Good luck to everyone.
Good luck to everyone.
Sunday, August 7, 2011
Round 7: DMPS Ends! Also Another Rant
This round was a little more interesting than the others. I added in 1000mg of EDTA once in the morning. I did feel a little blah at times, but no hives so I am happy right now. I went a full 6 days and quit half way through today to give my body some rest. My minerals were definitely low a few days ago so I upped my normal doses of minerals. This made the cramping in my feet go away, but I will continue on this higher dose for a while.
We will see what happens in the next few days. Will the hives make an appearance this time around? That is the million dollar question...
We will see what happens in the next few days. Will the hives make an appearance this time around? That is the million dollar question...
Tuesday, August 2, 2011
Stopping Beta 1,3D Glucan
I have never had a supplement effect me so much before. Beta 1,3D Glucan is supposed to boost the immune system. I am always a little leery of things that do this, but wanted to give it a try.
Beta 1,3D Glucan is supposed to do the following:
Beta 1,3D Glucan is supposed to do the following:
The amount of anxiety and revving of my system was horrific. I actually had to take a beta blocker yesterday and I'm done with this supplement now. I think I took it for about a 8 or 9 days. Whatever arm of my immune system it boosted, directly impacts my POTS and anxiety, hyper feelings. It really makes me think my POTS is autoimmune in origin.Beta-1,3D Glucan works by activating immune cells known as macrophages, neutrophils and natural killer (NK) cells. These are your immune system’s first line of innate defense. They are responsible for finding, identifying, and consuming foreign substances in the body. Macrophages also control the activities of other important cells in the immune system.To maximize the benefits of Beta Glucan, you should always take it on an empty stomach. Wait at least 30 minutes before eating or drinking anything. A small amount of pure water should be used to swallow the capsule. (No coffee, tea, juice, etc.).
Monday, August 1, 2011
Round 7: DMPS Begins
Today I started round 7 of DMPS. I am taking 10mg of DMPS, 3 times a day. I don't get too focused on taking it every 8 hours because I like to be able to sleep at night. Last round I also took EDTA in the morning and I am doing this again since I didn't get hives last time.
Thursday, July 28, 2011
Forgetting HC Doses
Ever since this last round of DMPS, I have been completely forgetting HC doses. I woke up today and I have no idea if I took it or not. I don't think I did, but then I don't feel like I did not. Hmmm Is this is a good sign or am I just getting more forgetful? haha
I think I could probably go down to 12.5mg without any consequences. Something has changed for sure. One day I only took 5mg and did not realize it until 11pm. I am cautiously optimistic. I'm not sure what this means for me right now and I'm just playing it by hear.
Also I should start up on DMPS again here real soon. I never got any hives! I had some skin dermatographia, but I can handle that without any issues.
I should also note that I have been trying a few other things lately. Right now I am taking Body Biotics probiotics. It has definitely slowed my bowels. Maybe a little too much. I am also taking something called Beta-1,3D Glucan. This is supposed to help the immune system. It's all things my husband researched and told me to take. haha!! I am so thankful my spouse cares this much.
I think I could probably go down to 12.5mg without any consequences. Something has changed for sure. One day I only took 5mg and did not realize it until 11pm. I am cautiously optimistic. I'm not sure what this means for me right now and I'm just playing it by hear.
Also I should start up on DMPS again here real soon. I never got any hives! I had some skin dermatographia, but I can handle that without any issues.
I should also note that I have been trying a few other things lately. Right now I am taking Body Biotics probiotics. It has definitely slowed my bowels. Maybe a little too much. I am also taking something called Beta-1,3D Glucan. This is supposed to help the immune system. It's all things my husband researched and told me to take. haha!! I am so thankful my spouse cares this much.
Thursday, July 14, 2011
Singing Is Not POTS Friendly, But I Don't Care Anymore
Those with POTS know that controlling your breath for what is needed to sing properly, can be really bad for the heart. Well I do not care anymore and I am once again getting more serious into my singing and vocals. If you haven't been following me for long, then back in 2008 while I was chelating for the first time I started taking some local vocal lessons. They were really pretty awful. In some ways I think I was better than the teacher and all she talked about was breathing. /sigh That's really the only thing these teachers talk about and I can get that type of advice on Youtube. There are hundreds of vocal coaches on Youtube making videos...
Wednesday, July 13, 2011
NO HIVES!
I have been waiting and waiting and waiting to make this post because I did not want to jinx myself. Well I think I can now officially say I did not get hives with this latest round. This is really good news to me! I will continue at 10mg DMPS from here on out until I am brave enough to raise it again. :)
Thursday, July 7, 2011
Round 6: DMPS Ends
I went a full 5 days and decided it as time to call it quits for now. No reason in pushing this too far. So far, I have no hives but that means nothing. They can literally pop up out of no where, so I am just getting ready. I have been taking my hives regimen throughout this entire chelation round to see if that makes a difference.
My vision is definitely changing. The glasses I wear are pretty old. I've had my contacts prescription changed several times since I got the glasses. Glasses just get so expensive to replace, so I've kept these as my lounging eye wear. Well now I am not seeing the same out of them. I think in my right eye I am seeing better. My left eye still seems quite blurry. When I put my contacts in, I am also not seeing the same out of both eyes. This one is significantly harder to figure out, so I'm going to be heading to the eye docs soon enough. I am due for more contacts and my eye exam is over a year old so I have to get a new exam to get new contacts. I am curious to see what has happened with my eyes. They have been getting worse every year. In the past 3-5 years, my eyes have gotten quite bad. My right eye is -5.75, left eye is -5.25. If anything, I think my right eye is about the same and my left eye is catching up to the right. haha The left eye has the "we think it's a torn vitreous but we aren't sure" and something called "white without pressure". However most places say both are benign. Still makes me wonder about it all at times with my other health issues.
The heat has just been terrible. This is a bad summer for all POTS sufferers out there. I definitely had heat exhaustion the other day and my temps have been well over 99. Earlier today I was pushing 99.2 and that was after getting a cold bath.
I just keep chugging along here. Lately I've been putting almost all of my energy into singing. I want to get really good and possibly make some music. That's been my life's dream for many years now. Now that I am feeling a little better, I am motivated. I think my voice sounds a lot like Sharon Den Adel from the band Within Temptation. She's more comfortable with her head tone, but I'm working on it. My singing has come a long ways over the years, which is mostly self-trained. Those few lessons I took years back were nothing.
My vision is definitely changing. The glasses I wear are pretty old. I've had my contacts prescription changed several times since I got the glasses. Glasses just get so expensive to replace, so I've kept these as my lounging eye wear. Well now I am not seeing the same out of them. I think in my right eye I am seeing better. My left eye still seems quite blurry. When I put my contacts in, I am also not seeing the same out of both eyes. This one is significantly harder to figure out, so I'm going to be heading to the eye docs soon enough. I am due for more contacts and my eye exam is over a year old so I have to get a new exam to get new contacts. I am curious to see what has happened with my eyes. They have been getting worse every year. In the past 3-5 years, my eyes have gotten quite bad. My right eye is -5.75, left eye is -5.25. If anything, I think my right eye is about the same and my left eye is catching up to the right. haha The left eye has the "we think it's a torn vitreous but we aren't sure" and something called "white without pressure". However most places say both are benign. Still makes me wonder about it all at times with my other health issues.
The heat has just been terrible. This is a bad summer for all POTS sufferers out there. I definitely had heat exhaustion the other day and my temps have been well over 99. Earlier today I was pushing 99.2 and that was after getting a cold bath.
I just keep chugging along here. Lately I've been putting almost all of my energy into singing. I want to get really good and possibly make some music. That's been my life's dream for many years now. Now that I am feeling a little better, I am motivated. I think my voice sounds a lot like Sharon Den Adel from the band Within Temptation. She's more comfortable with her head tone, but I'm working on it. My singing has come a long ways over the years, which is mostly self-trained. Those few lessons I took years back were nothing.
Sunday, July 3, 2011
Heat Intolerance Is My Top POTS Symptom
There was an interesting post on dinet.org the other day. A poster asked us to list our top 5 POTS symptoms that cause problems for us on a daily basis. I was certain everyone would have tachycardia on their list, but that was not the case. How can you have POTS (postural orthostatic tachycardia syndrome) and NOT have tachycardia or heart symptoms on your top 5 list... Am I missing something here?
If you were to list your top 5 symptoms, what would they be? Fatigue? Pain? Gastrointestinal issues? Let me know what all of you are going through. I am very curious to see how different yet how similar we are too.
My top 5 symptoms are as followed:
Now many people would insist that I have adrenal fatigue and need to go on "adrenal support". No you are wrong. I will continue to repeat this as many times as I need to until I am blue in the face.
POTS is not adrenal fatigue. POTS is not adrenal fatigue. POTS is not adrenal fatigue. POTS is not adrenal fatigue. POTS is not adrenal fatigue.
/Rant on
Do some POTS patients have symptoms that mimic those with adrenal issues? Absolutely, but it does not mean we all have adrenal problems and need hydrocortisone, florinef or "adrenal support". It is simply a THEORY that has been repeated so many times, that people have started to believe it as truth. Those who perpetuate the THEORY usually have never ever had POTS, yet they speak about it as if they are an authoritative source of information. Ugh! :( Believe me when I say it does not go away with some salt, florinef, and hydrocortisone. If it did I would not be here anymore writing on my blog.
/Rant off
Now that it is summer, I really have to be careful outside or even in the house. I get heat exhaustion so very easily compared to most normal people. Today I believe I woke up with the beginning stages of heat exhaustion simply because we did not have the A/C turned on in our bedroom last night. I woke up with a mild fever, headache and nausea. This is one of the reasons why I do not pay any attention to basal temperatures or even daytime temperatures. For me it varies according to the room temperature. Have any of you ever noticed an increase in temps during the summer? If so you likely have body temperature regulation issues too.
When I wake up in this crisis state, it is very difficult to pull myself out of it without intervening with ways to cool my body down as quickly as possible. Cold baths, ice cold water and air conditioning is the only thing that helps. Once my body finally cools down I am good. I feel completely normal and can go about my day. I know that sounds really weird and perhaps I am an usual case, but I always tell people I really do just have POTS. I do not have chronic fatigue syndrome or hypothyroid. If I fixed my POTS, I'd be nearly 100% better.
This summer has been better than previous years, so I am thankful for that. However I still have a long way to go until I will consider myself recovered or cured.
Update 8AM July 4: Things did not go as well as I had originally thought when I made this post. I continued down the heat exhaustion path for most of the night. At one point I was shaking, had goosebumps, throbbing headache and felt terrible. My temperature was running 99.6. I got an ice cold bath, drank lots of ice water and I still was having trouble getting my temperature down. Finally now after many hours after becoming increasingly worried, I got my temperature down to the low 99's, then high 98's and now it is about 98.4. I still have an awful throbbing headache and that likely will not go away until I sleep for the day. I hope I staved off an ER trip. That would be 2 holidays where I made an appearance. Let's hope all of this corrects itself today. Yes we are running the AC tonight too!
Here's a few other posts I've made on this subject.
2012- Heat Intolerance: It's Too Darn Hot!
2011- Getting Through the Heat Intolerance
If you were to list your top 5 symptoms, what would they be? Fatigue? Pain? Gastrointestinal issues? Let me know what all of you are going through. I am very curious to see how different yet how similar we are too.
My top 5 symptoms are as followed:
- Heat intolerance
- tachycardia with shortness of breath (when standing of course)
- anxiety, "crazy" wired feelings
- shakiness/tremors
- exercise intolerance
Now many people would insist that I have adrenal fatigue and need to go on "adrenal support". No you are wrong. I will continue to repeat this as many times as I need to until I am blue in the face.
POTS is not adrenal fatigue. POTS is not adrenal fatigue. POTS is not adrenal fatigue. POTS is not adrenal fatigue. POTS is not adrenal fatigue.
/Rant on
Do some POTS patients have symptoms that mimic those with adrenal issues? Absolutely, but it does not mean we all have adrenal problems and need hydrocortisone, florinef or "adrenal support". It is simply a THEORY that has been repeated so many times, that people have started to believe it as truth. Those who perpetuate the THEORY usually have never ever had POTS, yet they speak about it as if they are an authoritative source of information. Ugh! :( Believe me when I say it does not go away with some salt, florinef, and hydrocortisone. If it did I would not be here anymore writing on my blog.
/Rant off
 |
| Heat Intolerance is a major problem for me in the summer. |
When I wake up in this crisis state, it is very difficult to pull myself out of it without intervening with ways to cool my body down as quickly as possible. Cold baths, ice cold water and air conditioning is the only thing that helps. Once my body finally cools down I am good. I feel completely normal and can go about my day. I know that sounds really weird and perhaps I am an usual case, but I always tell people I really do just have POTS. I do not have chronic fatigue syndrome or hypothyroid. If I fixed my POTS, I'd be nearly 100% better.
This summer has been better than previous years, so I am thankful for that. However I still have a long way to go until I will consider myself recovered or cured.
Update 8AM July 4: Things did not go as well as I had originally thought when I made this post. I continued down the heat exhaustion path for most of the night. At one point I was shaking, had goosebumps, throbbing headache and felt terrible. My temperature was running 99.6. I got an ice cold bath, drank lots of ice water and I still was having trouble getting my temperature down. Finally now after many hours after becoming increasingly worried, I got my temperature down to the low 99's, then high 98's and now it is about 98.4. I still have an awful throbbing headache and that likely will not go away until I sleep for the day. I hope I staved off an ER trip. That would be 2 holidays where I made an appearance. Let's hope all of this corrects itself today. Yes we are running the AC tonight too!
Here's a few other posts I've made on this subject.
2012- Heat Intolerance: It's Too Darn Hot!
2011- Getting Through the Heat Intolerance
Saturday, July 2, 2011
Round 6: DMPS Begins
I started ~9mg of DMPS yesterday afternoon. So far no hives at all and I am doing great. I have no idea how long I'm going on this round and will just play it by ear. I have enough pills made up for 7 days, but I don't believe I will do that. There were some warning signs of hives beginning to form at the end of day 6 last time, so I think maybe 5-6 days is where I'm aiming.
One thing I've noticed while taking any type of chelator is that it tends to make my bladder hurt. It feels like a UTI or bladder infection, but there is nothing there. At least nothing that my strips can catch. I used to have this many many moons ago. I think before I even started my blog and to this day I don't even know what stopped it from happening. It may have been Vitalzym? The one time I did have an infection, so I will have to keep an eye on that and go get tested if it gets bad.
I am trying to drink enough water to make myself pee at least every 2-3 hours to flush everything out. In the summer there are times where I don't pee much, but I'm going to make myself keep drinking until I do.
Oh I am also taking 1 pill of EDTA (calcium form) in the AM this round to see if that helps or makes anything worse. Our bathtub is testing for lead AGAIN, so that's fun.
One thing I've noticed while taking any type of chelator is that it tends to make my bladder hurt. It feels like a UTI or bladder infection, but there is nothing there. At least nothing that my strips can catch. I used to have this many many moons ago. I think before I even started my blog and to this day I don't even know what stopped it from happening. It may have been Vitalzym? The one time I did have an infection, so I will have to keep an eye on that and go get tested if it gets bad.
I am trying to drink enough water to make myself pee at least every 2-3 hours to flush everything out. In the summer there are times where I don't pee much, but I'm going to make myself keep drinking until I do.
Oh I am also taking 1 pill of EDTA (calcium form) in the AM this round to see if that helps or makes anything worse. Our bathtub is testing for lead AGAIN, so that's fun.
Thursday, June 23, 2011
Hope: Keeping up with my Nephew!
For the last 2 days my sister needed me to watch her son for a few hours. I used to cringe when she'd ask me because I was always concerned if I could get through the day. My nephew is really behaved quite well for a 5 year old and he is very laid back and easygoing. Any time I watched him and did not feel good he was very understanding. I know adults who are less understanding than my nephew! HA!
It has been very warm lately and of course I was concerned about my heat intolerance. Can I even stand up outside let alone play with him? Yikes. On bad days just walking to the car would make me feel as if I were going to die.
Well it turned out that I not only could stand up outside, but we were playing tag! We sprinted, yes SPRINTED around the yard playing tag for about 30 minutes or so. I'm happy to report he got tired before me and wanted to go in for a drink of water. :) You can not even believe how excited and happy I am about all of this. It was 83 degrees with very high humidity outside so something is going on with me. Am I cured? Nope, but there is a big enough difference that I have noticed. I have a long ways to go, but this is giving me so much hope and optimism. It is actually a little scary! I was afraid to hit POST on this one. Will I jinx it?!
Last night (after watching my nephew for two days and going on walks at the park afterward, cleaning, making dinner, any other normal duties that need done in my house etc) I did have a headache, but it was gone when I woke up this morning. YAY! I have no post exertional malaise today, although that has never been a big issue for me in the past. It is not quite as warm today, but the humidity is very high. That's usually all I need to feel sick and I am doing well.
Like I said, I am NOT cured by any means, but this is very interesting. I just hope I keep getting better and it doesn't stop here.
It has been very warm lately and of course I was concerned about my heat intolerance. Can I even stand up outside let alone play with him? Yikes. On bad days just walking to the car would make me feel as if I were going to die.
Well it turned out that I not only could stand up outside, but we were playing tag! We sprinted, yes SPRINTED around the yard playing tag for about 30 minutes or so. I'm happy to report he got tired before me and wanted to go in for a drink of water. :) You can not even believe how excited and happy I am about all of this. It was 83 degrees with very high humidity outside so something is going on with me. Am I cured? Nope, but there is a big enough difference that I have noticed. I have a long ways to go, but this is giving me so much hope and optimism. It is actually a little scary! I was afraid to hit POST on this one. Will I jinx it?!
Last night (after watching my nephew for two days and going on walks at the park afterward, cleaning, making dinner, any other normal duties that need done in my house etc) I did have a headache, but it was gone when I woke up this morning. YAY! I have no post exertional malaise today, although that has never been a big issue for me in the past. It is not quite as warm today, but the humidity is very high. That's usually all I need to feel sick and I am doing well.
Like I said, I am NOT cured by any means, but this is very interesting. I just hope I keep getting better and it doesn't stop here.
Making Progress with DMPS
I am convinced now that DMPS is what people need to use to feel better. I have talked about it before, but the few people who were "following" Dr. Cutler's FDC who got significantly better ALL used DMPS at some point or another.
Only a few members of FDC even use DMPS because so many of them are fearful of the drug even though Dr. Cutler says it is safe and recommended here, here and here. They refuse to find a doctor to prescribe it, which makes me believe you can't really be that sick! They are afraid it is not FDA approved, which is once again just another excuse to stay sick. (Alert: Amalgams were FDA approved!) Those who use DMPS have less side effects and symptoms and actually seem to legitimately feel better much faster.
Others using DMPS not strictly following FDC who got better as well:
MercuryLife Blog. Read the entire story!
MS - Ten years bedridden - cured by Amalgam removal
Woman was bedridden with CFS
Another person with CFS Cured
Another woman with CFS finally getting better with chelation
DMPS is the common link in all of these stories. Some of them have done other things alongside it too. However these people should not be considered "lucky" or less toxic. When you start looking at stories of those who got truly better, they all used DMPS in some form or another (oral or IV) at some point in time during their journey.
I'm not really following FDC and taking DMPS every 8 hours. I take it when I get up in the AM, mid-day and then at bedtime, so I don't have to interrupt my sleep at all. With an odd circadian rhythm, even at every 8 hours sometimes the doses would fall while I was sleeping. I had enough of that and just decided to take it at bedtime regardless of what time it was. Sometimes it was at 10 or 11 hours out from my previous dose. I don't think it really matters at all and you could probably take it on any schedule and still see some improvements (my opinion only not based on any scientific evidence).
If you are following Dr. Cutler's protocol and have completed double digit rounds of DMSA or ALA and not feeling or seeing improvements, then consider finding a doctor who will prescribe DMPS. It may be the difference of getting your life back. Isn't that the most important?!
The doctor who prescribed me DMPS NEVER PRESCRIBED IT BEFORE TO ANYONE. I am his FIRST patient and my husband is his SECOND, so please do not try to use "well I don't know if my doctor would do that" as an excuse to keep staying sick. If you really want to use DMPS, then you will find a doctor or beg a doctor who is open-minded enough to use it. I actually had to fax my doctor some information that talked about using oral DMPS and after reading it all he had no issues with me trying it out.
In 5 rounds of DMPS I am feeling the best I've felt in 11 years. I am not over exaggerating or making this up at all. Some people may say that it is placebo, but how could a POTS patient make their heart rates not climb as high while standing? ... How could I have less heat intolerance? ...
Is it all good? NO! The hives are still problematic as evident from my last post and I am concerned about it and SJS. The latest set of hives were focused more around my joints (knees, elbows, wrists and ankles) and thankfully I did not have any hives on my neck at all. This made me very happy because I knew I was not going to have any issues with my throat swelling up.
Outside of the hives I have zero symptoms on and off round. Not many can say that about ALA or DMSA and I really don't understand why someone would continue to take something that is terrible at chelating metals... Dr. Buttar says that it is dangerous to use DMSA. Dr. Cutler's followers had a discussion about this in 2009 and rather than scientifically disproving it is dangerous, they just called the doctor an idiot, he doesn't know what he's talking about and he is promoting his own chelation protocol. Um..And how is Dr. Cutler any different? Dr. Cutler sells consultations too...
And to put it into further perspective at least 2 people in this thread are still sick on FDC. I guess your own irrational fear and advice is not working out for you. Stop drinking the Cutler kool aid!
Many people have become fearful of DMPS due to the fearmongering website, DMPSbackfire. For years I thought it was the devil and was harmful because "Dr. Cutler says so". However since DMSA did not do anything for me at all and may even be dangerous itself, I started to question all of that. Now that I'm taking DMPS and feeling better I realize how stupid it was to have an irrational fear of it. The stories on that website really should just be called "when stupid doctors strike" because they were doing terribly stupid things with DMPS like chelating people WITH amalgams STILL in their mouths! How could any doctor even think that would be a good idea?
If DMPS IV's are too scary for you, then you can use it orally too just like DMSA. That's what I am doing for the time being.
I gave my doctor a PDF from this website. I have no idea what this doctor recommends with chelation, but I found the clinical trial of interest and that is what I showed my doctor.
If you are following FDC, let me know what you think about this theory that DMPS is the key!
Disclaimer: As always these are my opinions on things. I am not a doctor and are simply telling you of my experiences and relaying data/materials I have found online over the years. Everyone with a chronic illness should be following up with a doctor and if you are not, then start today.
Only a few members of FDC even use DMPS because so many of them are fearful of the drug even though Dr. Cutler says it is safe and recommended here, here and here. They refuse to find a doctor to prescribe it, which makes me believe you can't really be that sick! They are afraid it is not FDA approved, which is once again just another excuse to stay sick. (Alert: Amalgams were FDA approved!) Those who use DMPS have less side effects and symptoms and actually seem to legitimately feel better much faster.
Others using DMPS not strictly following FDC who got better as well:
MercuryLife Blog. Read the entire story!
MS - Ten years bedridden - cured by Amalgam removal
Woman was bedridden with CFS
Another person with CFS Cured
Another woman with CFS finally getting better with chelation
DMPS is the common link in all of these stories. Some of them have done other things alongside it too. However these people should not be considered "lucky" or less toxic. When you start looking at stories of those who got truly better, they all used DMPS in some form or another (oral or IV) at some point in time during their journey.
I'm not really following FDC and taking DMPS every 8 hours. I take it when I get up in the AM, mid-day and then at bedtime, so I don't have to interrupt my sleep at all. With an odd circadian rhythm, even at every 8 hours sometimes the doses would fall while I was sleeping. I had enough of that and just decided to take it at bedtime regardless of what time it was. Sometimes it was at 10 or 11 hours out from my previous dose. I don't think it really matters at all and you could probably take it on any schedule and still see some improvements (my opinion only not based on any scientific evidence).
If you are following Dr. Cutler's protocol and have completed double digit rounds of DMSA or ALA and not feeling or seeing improvements, then consider finding a doctor who will prescribe DMPS. It may be the difference of getting your life back. Isn't that the most important?!
The doctor who prescribed me DMPS NEVER PRESCRIBED IT BEFORE TO ANYONE. I am his FIRST patient and my husband is his SECOND, so please do not try to use "well I don't know if my doctor would do that" as an excuse to keep staying sick. If you really want to use DMPS, then you will find a doctor or beg a doctor who is open-minded enough to use it. I actually had to fax my doctor some information that talked about using oral DMPS and after reading it all he had no issues with me trying it out.
In 5 rounds of DMPS I am feeling the best I've felt in 11 years. I am not over exaggerating or making this up at all. Some people may say that it is placebo, but how could a POTS patient make their heart rates not climb as high while standing? ... How could I have less heat intolerance? ...
Is it all good? NO! The hives are still problematic as evident from my last post and I am concerned about it and SJS. The latest set of hives were focused more around my joints (knees, elbows, wrists and ankles) and thankfully I did not have any hives on my neck at all. This made me very happy because I knew I was not going to have any issues with my throat swelling up.
Outside of the hives I have zero symptoms on and off round. Not many can say that about ALA or DMSA and I really don't understand why someone would continue to take something that is terrible at chelating metals... Dr. Buttar says that it is dangerous to use DMSA. Dr. Cutler's followers had a discussion about this in 2009 and rather than scientifically disproving it is dangerous, they just called the doctor an idiot, he doesn't know what he's talking about and he is promoting his own chelation protocol. Um..And how is Dr. Cutler any different? Dr. Cutler sells consultations too...
And to put it into further perspective at least 2 people in this thread are still sick on FDC. I guess your own irrational fear and advice is not working out for you. Stop drinking the Cutler kool aid!
Many people have become fearful of DMPS due to the fearmongering website, DMPSbackfire. For years I thought it was the devil and was harmful because "Dr. Cutler says so". However since DMSA did not do anything for me at all and may even be dangerous itself, I started to question all of that. Now that I'm taking DMPS and feeling better I realize how stupid it was to have an irrational fear of it. The stories on that website really should just be called "when stupid doctors strike" because they were doing terribly stupid things with DMPS like chelating people WITH amalgams STILL in their mouths! How could any doctor even think that would be a good idea?
If DMPS IV's are too scary for you, then you can use it orally too just like DMSA. That's what I am doing for the time being.
I gave my doctor a PDF from this website. I have no idea what this doctor recommends with chelation, but I found the clinical trial of interest and that is what I showed my doctor.
If you are following FDC, let me know what you think about this theory that DMPS is the key!
Disclaimer: As always these are my opinions on things. I am not a doctor and are simply telling you of my experiences and relaying data/materials I have found online over the years. Everyone with a chronic illness should be following up with a doctor and if you are not, then start today.
Sunday, June 19, 2011
Mercury Hives: What Can I Do?
When I started chelating in 2008 with DMSA, I got hives and did not understand at that time what was going on. I thought I had just developed food allergies or something because they lasted for so long. I stopped chelating for about 2 years because I felt really sick and eventually the hives went away on their own. I had changed my diet and part of me thought that was why the hives went away.
Then I decided I needed to start back up on chelation and the hives came back full force.
I knew this was no a coincidence and the hives are indeed directly caused by chelation. In a desperate attempt, I decided to try DMPS to see if it was caused specifically by the DMSA. Much to my dismay, after 3 rounds of DMPS the hives started to show up once I went off-round. This time even more severe than before if you can even imagine that looking at some of the old pictures. In yet another desperate attempt to stop them, I went on Diflucan and took probiotics, but neither of those did anything to stop the hives. In my case they are NOT caused by a yeast flare up or anything like that.
What does this mean? What am I to do?
I sit here tonight with hives galore. They are so very itchy it is hard to concentrate on anything. Taking benedryl barely touches them and the only thing I feel is deliriousness and completely drugged out of my mind. The last time I had to get a dexamethasone injection and take prednisone for them to stop. Even still, the hives continued on for days while on 60mg of prednisone. This is a serious allergic reaction and I do not know where to go from here. I cannot keep doing this.
With DMPS there is a risk of developing a potentially fatal condition called, Stevens Johnson Syndrome.
"Signs and symptoms of Stevens-Johnson syndrome include:
My next step is to take EDTA and see what happens. The Cutler folk will have you believe that I'm going to kill myself with EDTA, but at this point I need to see if the hives happen on EDTA as well. If they do, then I seriously have no idea what I'm going to do. With the amalgam tattoo gone, I thought this would stop. No such luck in my case.
I may start the EDTA tonight and see how I do.
Then I decided I needed to start back up on chelation and the hives came back full force.
I knew this was no a coincidence and the hives are indeed directly caused by chelation. In a desperate attempt, I decided to try DMPS to see if it was caused specifically by the DMSA. Much to my dismay, after 3 rounds of DMPS the hives started to show up once I went off-round. This time even more severe than before if you can even imagine that looking at some of the old pictures. In yet another desperate attempt to stop them, I went on Diflucan and took probiotics, but neither of those did anything to stop the hives. In my case they are NOT caused by a yeast flare up or anything like that.
What does this mean? What am I to do?
 |
| Hives caused by chelation |
With DMPS there is a risk of developing a potentially fatal condition called, Stevens Johnson Syndrome.
"Signs and symptoms of Stevens-Johnson syndrome include:
- Facial swelling
- Tongue swelling
- Hives
- Skin pain
- A red or purple skin rash that spreads within hours to days
- Blisters on your skin and mucous membranes, especially in your mouth, nose and eyes
- Shedding (sloughing) of your skin"
My next step is to take EDTA and see what happens. The Cutler folk will have you believe that I'm going to kill myself with EDTA, but at this point I need to see if the hives happen on EDTA as well. If they do, then I seriously have no idea what I'm going to do. With the amalgam tattoo gone, I thought this would stop. No such luck in my case.
I may start the EDTA tonight and see how I do.
Friday, June 17, 2011
Update On Tooth
Well the weird pain I am getting is not from the tooth with the metal post. It seems that either 1)I have brushed my gums so hard in the past 2 months that I have caused gum recession or 2) getting the amalgam tattoo removed did indeed cause some gum recession or 3) chelation is doing something to the gums.
I guess it could be a combination of all of those things. I just find it SOO strange that my dentist used to say how GREAT my gums looked and now I have severe recession in the exact same area where the gray tooth and amalgam tattoo was removed.
I still have a metal post in that tooth that needs taken care of and that can only be resolved with a crown. That's $1200 I don't have.
I just keep on going I guess. I have hives tonight and it is NOT looking good. I feel no need to put more pictures of the hives on here because there's more than enough already. haha
I guess it could be a combination of all of those things. I just find it SOO strange that my dentist used to say how GREAT my gums looked and now I have severe recession in the exact same area where the gray tooth and amalgam tattoo was removed.
I still have a metal post in that tooth that needs taken care of and that can only be resolved with a crown. That's $1200 I don't have.
I just keep on going I guess. I have hives tonight and it is NOT looking good. I feel no need to put more pictures of the hives on here because there's more than enough already. haha
Heavy Metal Chelation Round 5: DMPS Ends
I went a little longer this time, (~6.5 days) but as soon as I noticed a hive, I stopped. I immediately started my "here comes the hives" supplement/medicine regime. I took a benedryl, zyrtec, 3 grams of Vitamin C and 2 grams of Quercetin before bed. I woke up and I was good. No hives and so far I haven't had any more develop. Last night I took more zyrtec, vitamin C, quercetin and half a benedryl. So far so good. I think I have a few mosquito bites though and it is hard to tell the difference between them and hives. haha
The good:
I think I am already seeing improvements on the DMPS. I hate even say this or type this because I don't think I've said these words on my blog, ever?
The good:
I think I am already seeing improvements on the DMPS. I hate even say this or type this because I don't think I've said these words on my blog, ever?
- My heat intolerance seems a tad better. 5% better
- My heart seems less aggravated at times. 3% better
- My vision is getting clearer again.
- Obviously the hives are bad. Hopefully they stay away.
- I think the DMPS is reacting with a metal post in one of my teeth.
Friday, June 10, 2011
People Are No Longer Open-Minded
Over the past 4 years I have realized that people in the alternative health community are no longer open minded. Each forum has their "go-to" way of doing things and if you question or stray from it, you get yelled at, screamed at, banned or told to go away because you are being disruptive. Well excuse me for asking questions about the treatment or protocol that you sit and defend for hours a day. I thought maybe you had something to back up your claims or perhaps you yourself are feeling better? Oh no you aren't feeling better?....Hmm Well then why would you defend something that has not made YOU feel better? I truly cannot understand it and would like an explanation.
Wednesday, June 8, 2011
Round 5: DMPS Begins
Well here we go again. I started Round 5 of my DMPS chelation around 11:45AM and will be going for at least 3 days. I may try to do longer rounds, but we will see. I have drastically lowered my dose to 10mg capsules every 8 hours to see if I still break out in hives. So far so good, but on round is never my problem...
Sunday, May 29, 2011
No Longer Trying to Come Off HC
This was likely my last experiment. I guess I have adrenal insufficiency of unknown origin and I need to be done with it. Lowering my dose caused major high DHEA symptoms and my emotional well-being started to deteriorate. I finally just went back up to 15mg and am just done with it all. I really wish my doctor had done the appropriate testing to see if I really had a problem because now I cannot come off of it to test. Thanks doc! There is really only 1 thing I can test for while on HC and that is 17OH progesterone. You have to test it first thing in the morning, BEFORE taking your HC for the day. You want to see if this is elevated in the AM because if so, then that's pretty telling the pathway is getting backed up.
Once I went back on the 15mg of HC, not taking DHEA gave me major depression. It took about 3 days for it to appear (probably the amount of time it took for all of that extra DHEA to go down) and I felt like dying.
Now I'm back on 12.5mg DHEA and my normal 15mg of HC. Glad the latest experiment is over with.
Once I went back on the 15mg of HC, not taking DHEA gave me major depression. It took about 3 days for it to appear (probably the amount of time it took for all of that extra DHEA to go down) and I felt like dying.
Now I'm back on 12.5mg DHEA and my normal 15mg of HC. Glad the latest experiment is over with.
Thursday, May 19, 2011
Stopping the DHEA For Now
Ever since coming off the Pred, I decided to just keep going with the HC too. If I can get off of this then in a few weeks I can get the appropriate testing done for late onset congenital adrenal hyperplasia (LOCAH) as well as looking into getting a stim test done.
For those who do not know what LOCAH is, basically your body has enzymes which are needed to convert your hormones into cortisol and aldosterone. You can look at this hormone pathway chart on this page to see every step takes an enzyme.
If you are deficient or missing one of those enzymes, then the step before it gets "backed up" and you are unable to create enough cortisol or aldosterone in the body. Your body starts dumping this extra hormone into DHEA and you grow extra hair on your body. Some have it so severe, the hair growth is very thick, their periods stop and some women (if they have it at a young age) have weird changes to their genitals due to the androgens. If I have this, mine is not severe as I did not have the really thick hair growth, but I am definitely more hairier than most women.
This testing I should have had done in the beginning. My natural doctor conveniently had no idea what he was doing when he said my 17 OH progesterone was normal even though it was slightly elevated during my follicular stage of my cycle.This should NEVER be elevated and I should have immediately been referred to an endo. A slight elevation means serious issues needs ruled out. There is no way around this and this doctor failed.
For those who do not know what LOCAH is, basically your body has enzymes which are needed to convert your hormones into cortisol and aldosterone. You can look at this hormone pathway chart on this page to see every step takes an enzyme.
If you are deficient or missing one of those enzymes, then the step before it gets "backed up" and you are unable to create enough cortisol or aldosterone in the body. Your body starts dumping this extra hormone into DHEA and you grow extra hair on your body. Some have it so severe, the hair growth is very thick, their periods stop and some women (if they have it at a young age) have weird changes to their genitals due to the androgens. If I have this, mine is not severe as I did not have the really thick hair growth, but I am definitely more hairier than most women.
This testing I should have had done in the beginning. My natural doctor conveniently had no idea what he was doing when he said my 17 OH progesterone was normal even though it was slightly elevated during my follicular stage of my cycle.This should NEVER be elevated and I should have immediately been referred to an endo. A slight elevation means serious issues needs ruled out. There is no way around this and this doctor failed.
Saturday, May 14, 2011
Off the Prednisone
Well I am off the prednisone and back on my regular dose of hydrocortisone. I am soo glad. I think I am finally back at my baseline as far as symptoms go. It took a couple days to make sure I was getting enough HC in me from the transition. I tapered much quicker than originally intended because I knew I would just go back to my normal HC dose. It wasn't like I wasn't on steroids in the first place. My adrenals are already suppressed, so the risk of further suppression is not there.
Wednesday, April 27, 2011
What It's Like to Be On 60mg of Pred... High Cortisol Hell
I think everyone (even some of those crazy hormone replacement doctors) would agree that 60mg of Prednisone is over replacement and is a pharmacological dose. 60mg of Prednisone is the equivalent of about 240mg of HC. I have never been on this much steroid before in my entire life. Add in that 10mg Decadron injection (about 600mg HC equivalent) and I am swimming in cortisol right now. This post is meant for those who are having trouble figuring out their current HC dose. However do not take anything I say as medical advice and before making any changes to your current medicines, be sure to bring it up with your doctor. Dosage changes in those with adrenal insufficiency is serious business and you should not be making changes based upon what someone says on a blog or forum.
Sunday, April 24, 2011
Hives Got REAL Bad, REAL Quick
 |
| Hives from heavy metal chelation |
Yesterday the hives got really bad. Like I thought my life was in jeopardy because I started to have trouble swallowing and speaking. I went to the urgent care and was given a mega dose of Decadron (Dexamethasone) and told to take high doses of Prednisone for the next 15 days. Part of me was really worried about all of this and the injection, but I had little to no choice. My throat was starting to swell up on me and I was scared to go to sleep like that. Benedryl, zyrtec and some other type of antihistamine had no affect on the hives and I was freaking out.
Friday, April 22, 2011
Hives Are Not Fungal or Yeast
Now that I have been on the Diflucan and the hives have returned again (after stopping DMPS round), I think I can assume it is not from a fungal or yeast overgrowth. Right now they are not too bad, but we will see how the next few days go. I'm thinking longer rounds are the way to go for me since I have no symptoms while on round and the hives only start 2-3 days after I stop. Could it be metals resettling? I will never really know.
One weird thing I have noticed is in some areas of my body, my skin looks shiny. I have no idea what that is about. Maybe I'll try to take a picture, but I have a feeling it won't show up on my old camera.
One weird thing I have noticed is in some areas of my body, my skin looks shiny. I have no idea what that is about. Maybe I'll try to take a picture, but I have a feeling it won't show up on my old camera.
Thursday, April 21, 2011
Round 4: DMPS Complete
Yesterday I finished up round 4 of DMPS and I feel good. No hives! haha Once I get some more money, I'll get another month's worth filled and just keep going.
My vision is definitely different right now. I think one of my contacts may now be too strong for me. It is odd as I am not seeing the same out of both eyes and at times I think it may be giving me a slight dull headache. I've been wearing my glasses more because I don't tend to notice it as much. My left eye is -5.25 and my right eye is -5.75. I'm thinking the left eye may be too strong and I'll have to dig around to see if I have an old contact somewhere that is -5.00. If I had extra money lying around, I'd go to the eye doctor. I am actually due for a new exam (just got the reminder card in the mail!), but since I don't have the extra money I will just keep wearing these contacts for now.
On my off days I make sure to replenish my nutrients and minerals. The one multi-vitamin that was not giving me heart palpitations has gluten in it. AHH! I cannot win, so I am trying to take individual minerals. Taking all of these pills can get quite annoying at times.
My vision is definitely different right now. I think one of my contacts may now be too strong for me. It is odd as I am not seeing the same out of both eyes and at times I think it may be giving me a slight dull headache. I've been wearing my glasses more because I don't tend to notice it as much. My left eye is -5.25 and my right eye is -5.75. I'm thinking the left eye may be too strong and I'll have to dig around to see if I have an old contact somewhere that is -5.00. If I had extra money lying around, I'd go to the eye doctor. I am actually due for a new exam (just got the reminder card in the mail!), but since I don't have the extra money I will just keep wearing these contacts for now.
On my off days I make sure to replenish my nutrients and minerals. The one multi-vitamin that was not giving me heart palpitations has gluten in it. AHH! I cannot win, so I am trying to take individual minerals. Taking all of these pills can get quite annoying at times.
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