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!

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.

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.

23andme Data: GEDmatch's New Rare SNP Finder

July 17-2012- This tool has now been removed from the website...

[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!

Getting the Most Out of Your 23andme Data (Part 2)

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Getting the Most Out of Your 23andme Data (Part 1)

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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.

Quercetin Decreases COMT Activity

I found this interesting tidbit of information on Dr. Ben Lynch's facebook page today.

Quercetin is a potent inhibitor of COMT.                                         Ouch for those with COMT mutations.                                                                                 - Dr Lynch

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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.

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? 

[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. :)

**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!

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.
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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...

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....

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.

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.

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.

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.

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.