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, June 14, 2012
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
| Common | |
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| Rare (less than 1 percent) | |
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