I have been feeling out of it these past few days. I cannot put my finger on it, but something is not quite right. It's like low cortisol symptoms but taking more doesn't do anything. Blah! It also feels like low blood sugar, but that does not seem right either.
I'm getting this weird achy pain in the front of my head. Typically a mild headache mean low cortisol for me and I take an extra 2.5 or 5mg and I'm all better. Not this time around. Was it the extra 40mg I took that has my body messed up now? Was it just the surgery itself because I could have been exposed to some mercury? I have no idea. Or maybe it's because my sleep schedule is sooooo messed up! Perhaps this is more likely the case because I'm trying to switch my schedule around, so I am not taking my HC at the same time each day.
Well whatever it is, I hope it begins to pass.
In other news, I think I'll be getting DMPS from this local doctor. I had to basically beg him. Interestingly I had him take my BP while sitting and standing to let him to see what happens. My bp was like 145/90 sitting and as soon as I stood up he said my heart rate went insane but my BP didn't change at all. I was just glad he got to see it in action in his own office. I was sweating soo much and was feeling completely insane during that appointment. My norepinephrine goes through the roof when I'm engaged in deep conversation, which would raise the BP quite a lot. It can be unpleasant and I'll profusely sweat with pit stains and everything. That's so attractive!
Completely unrelated--I noticed some American robins are back in the area scrounging for food in the yard. I guess spring must be closer than I expected which is scary for me. The warm air is going to kill me this year.
Friday, March 4, 2011
Tuesday, March 1, 2011
Amalgam Tattoo is Gone!
 |
| Amalgam Tattoo Removed |
He asked me if I wanted to do it now and I said sure why not! Overall it was easy and not a big deal at all. I took some extra hydrocortisone (40mg) just to be sure but I probably could have gotten away with an extra 10 or 20mg.
The area was numbed and then the oral surgeon went to town. The nerve was not an issue at all. In fact he said he did not even see it, so that was good. He went all the way through "multiple tissue planes" to the bone and I could feel the pressure of him scrapping the bone!! WOW! Thankfully the numbing was good, so I didn't actually feel any pain.
Afterward he assured me it was highly likely this spot was just an amalgam tattoo. He said it looked consistent with one as he was removing the tissues, but it is important to know dark spots in your gums can be cancerous too. Because of that, the tissue was sent out for pathology and that report will come back in about a week. I go back to see him next week just to make sure everything is good.
There are dissolving stitches on the incision. It is very bloody and raw looking at the moment, so I have to be careful. He said to take it easy brushing in that area, but I can eat and drink whatever I want. My lip is still really numb, so I am taking it easy. It's funny trying to put lipstick on with a numb lip. haha
He asked me before he got started if I wanted pain pills. I was caught off guard by this question because I did not even think about the fact this might hurt afterward. I was so nervous about the nerve and the procedure, my brain completely left out the part this wound might be extremely painful. haha I told him I am not a fan of pain pills as they make me feel so out of it, but he gave me a prescription any way for vicodin. I did not get it filled yet, so I am hoping it does not hurt too bad. I can already feel some of the novacaine wearing off though and I do not have a good feeling about it. hahah!
I was planning on taking a picture, but I don't know if I can pull my lip back that far without disturbing the area. It is hard taking a picture of this area, so we'll see...
If any of you have a dark spot on your gums, please have it looked at!! Especially if it came out of no where and not related to a tooth restoration or filling. I will let you know what the report says when I see them again next week.
One thing to note. This doctor had a general idea what POTS was and he knew that I needed to take extra HC for the procedure. I was impressed!
Update @ 7PM
The novacain wore off hours ago and it is sore only if I move my mouth around. So I'm trying not to disturb it at all. I don't plan on needing the pain pill because it is only very tender otherwise. Thankfully it is not a bad throbbing pain I have had with other tooth aches and such. Nonetheless this sore is going to be a pain in the ass, I am now realizing because I cannot eat normal foods. haha
Update @ Midnight
Now it is hurting and I don't know. Nothing has changed with it. Eating earlier was rather interesting and I made myself some mashed potatoes. It just more annoying than anything. I want to be able to open my mouth up the whole way and I cannot. Doing that pulls on the stitches and that doesn't feel very good.
However I was able to snap this picture of the wound (seen at the top). It's already looking WAY better than earlier today.
Monday, February 28, 2011
First Walk of the Season!
It was still chilly yesterday but my husband and I went for our first walk of the season. It was beautiful because there was still ice on the lake. I should have brought my camera with me, but did not think about it at all.
We did not walk the full loop, but did about half way around and I decided it was better to take it easy. Since it was our first walk, we are out of practice and I didn't want to collapse after ward. haha!
None of my heart monitor watches work anymore, so I could not check my heart. Sometimes I think it is better that way... We walked up a steep hill and my heart immediately went insane. Probably 140's, so I know this summer is going to be rough.
I am so nervous about tomorrow (oral surgeon). AHH!!
We did not walk the full loop, but did about half way around and I decided it was better to take it easy. Since it was our first walk, we are out of practice and I didn't want to collapse after ward. haha!
None of my heart monitor watches work anymore, so I could not check my heart. Sometimes I think it is better that way... We walked up a steep hill and my heart immediately went insane. Probably 140's, so I know this summer is going to be rough.
I am so nervous about tomorrow (oral surgeon). AHH!!
Friday, February 25, 2011
Amalgam Tattoo
I've had this amalgam tattoo since I was 8 or 9 years old. The dentist who removed my amalgam fillings said it was in a really bad place. He was concerned about a nerve that runs near that area which could paralyze my face. Ok not cool.Well this week I am having an oral surgeon take a look at it to see if it is possible to have it removed. This thing is huge and I'd like to get the remaining amalgam out of my body to see if it makes any difference. I would have done it sooner, but the fact my dentist (whom I trust) said it was probably not possible, made me sort of forget about it. After reading a few studies, I am determined (within reason) to get this thing removed. It has been shown to increase your risk for mouth cancer and sinusitis. I have a stuffy nose almost all the time. In fact my nose drives me absolutely insane at times!
Here are a few studies that suggest amalgam tattoos are anything but "benign". In the very least they are making your immune system go crazy!
Ugh the tooth next to the amalgam tattoo is also leaking some sort of metal. The dentist who did that filling failed hardcore and the metal post which is supposed to hold the tooth in place is sticking out of my tooth deep under the gums. That's a $1200 crown I can't afford at the moment. It's been like this for years.
Wednesday, February 23, 2011
Feeling Rundown
Today I was feeling quite run down after coming off of chelation. I was depressed and just could not get moving at all. Blah. Hopefully tomorrow is a little better.
It did not help we got about 9 inches of snow yesterday and the driveway needed cleared out so we could run some errands. As soon as I started shoveling, I knew it was a bad idea. I did as much as I could and then thankfully my husband finished as I cleared off our car.
I do much better in the winter but I HATE shoveling snow. It is a POTS patient's nightmare. You are obviously upright, but you are also using your arms and constantly digging into the snow (bending down some) and then standing fully upright to dump the snow. With all of the position changes, the BP tends to fluctuate a lot. I recorded one of my highest HR's ever while shoveling at 186.
For me it is absolutely imperative that I keep cool and start taking off my hat and jacket if I begin to feel warm. If I start to sweat, then it is all over for me and my HR is probably already in the 150's. Shivering is better for me! It's not uncommon for me to wear a tank top under my wool coat in the winter...
It did not help we got about 9 inches of snow yesterday and the driveway needed cleared out so we could run some errands. As soon as I started shoveling, I knew it was a bad idea. I did as much as I could and then thankfully my husband finished as I cleared off our car.
I do much better in the winter but I HATE shoveling snow. It is a POTS patient's nightmare. You are obviously upright, but you are also using your arms and constantly digging into the snow (bending down some) and then standing fully upright to dump the snow. With all of the position changes, the BP tends to fluctuate a lot. I recorded one of my highest HR's ever while shoveling at 186.
For me it is absolutely imperative that I keep cool and start taking off my hat and jacket if I begin to feel warm. If I start to sweat, then it is all over for me and my HR is probably already in the 150's. Shivering is better for me! It's not uncommon for me to wear a tank top under my wool coat in the winter...
Monday, February 21, 2011
My Life's Health Timeline
I decided to go back and write even more specific details in my health timeline. Even though I consider my "onset" as the summer of 2000, there were signs something wasn't quite right as early as age 9.
4th Grade (1994)- I had a lot of anxiety issues. I would get panic attacks for no reason whatsoever. I was so fearful of everything. Most of my days were spent in the guidance counselor's office trying to sort out what was going on in my head. I still to this day have no idea what was going on. All I know is that I was terrified all the time. School was so scary for me, but it never had this much of affect on this until 4th grade.
6th Grade (1996)- I started to have the panic attacks again. I didn't want to go to school anymore. I'd cry every Sunday night and try to get out of going on Monday. There were a few times I just broke down and cried in class. My grandmother died unexpectedly this year, but I think I just used that as an excuse for my feelings. It was an easy out.
11th Grade (Summer 2000)- During marching band camp, I experienced severe heat intolerance for the first time. I nearly fainted, passed out every single day outside. The 'band moms' told me that I looked very pale, blue and I knew I felt better when I could sit down. Since I played trumpet I had to keep my arms way up, which made me feel so much worse. I kept water with me at all times and wore as little amount of clothing as possible. Still this was not enough to keep me from feeling ill. I had a terrible sore throat and just thought that the lightheadedness was from being sick.
Fall 2000- At some point I went to the doctors because I was having extreme fatigue and felt awful. I knew something was wrong when I started sleeping during class. I would sleep at any given time (bus, lunch, during class). Finally my PCP told me I had EBV and to take it easy for a while. I was told to quit marching band and to not partake in physical education at all.
I also became anorexic right around this time. I would overexercise and eat very little foods. The heat intolerance and lightheadedness continued.
Eventually my menstrual cycles stopped. I assume from the tremendous amount of stress my body was under since I was not eating properly. They were gone for about a year's time and only came back after I started to eat better. They have always been very regular since with a few exceptions here and there. Because of my anorexia, all of my other symptoms were blamed on that, even though I told my doctors these symptoms started before. No one listened.
May 2001-Still very much anorexic and thin, I went to my ex boyfriend's prom at another high school. It was soooo hot and I nearly fainted multiple times on the way there. Waiting in line to take pictures was soo difficult. I just pretended everything was okay and once we got into air conditioning, I was feeling much better. At this time, I was having severe digestive issues and had to take digestive enzymes when eating anything. This is when my lactose intolerance hit its peak.
June 2001-My friend and I went to our school picnic at Kennywood, which is a local amusement park. It was a very hot June day. I knew immediately upon getting on the school bus, that I was not feeling well. I had extreme nausea and a feeling like someone was punching me repeatedly in the stomach.
As soon as we got there, we decided to ride our first roller coaster which I've always enjoyed. We were standing in line when I suddenly felt myself become very weak and heavy feeling. As soon as I told my friend that I was feeling ill, I crashed down to the pavement. I could not see anything nor hear anything around me, yet I know that I was conscious, but could not lift myself up. My friend said that I turned blue and ran to get some help. I was taken to the first aid station where my BP was 60/40 and was told that I should rest and that I was probably just dehydrated. I slept for nearly 4 ½ hours and thought that I had only slept for like 20 minutes.
Even after getting fluids in me and resting, I continued to fall down and feel extremely nauseous all day long and my parents picked me up from the amusement park.
This is the first and last time I have ever “fainted”. Looking back though I often wonder if this was my first adrenal crisis. I can't believe I was not taken to the hospital. Really quite shocking to me.
Fall/Winter 2001-This was my senior year of high school. It took all my effort and will power to make it from class to class. I knew when it came time to switch classes I'd have to suck it up and make it up the stairs. Some classes I had to go up 3 floors, which would nearly kill me. Once I got in class, sat down, I'd feel much much better. I had major issues dealing with any type of stress. I'd begin to shake, feel nauseous, extremely cold and terrified. My anxiety issues started to show up again. Despite all of these problems, I did very well in school.
Age 18-20 After high school, I decided to go to community college and work. At first I just had a part-time job and then I started working full-time. I don't know how I even did all of this... Since I worked and lived in air conditioning, my heat intolerance wasn't as noticeable. My job allowed me to sit down most of the day, so that was helpful too. I just knew if I had to stand for a long time or go outside for any length of time, I felt very sick.
Age 20-22 Things began to progress and I continue to get worse. My attempts to keep up were not working anymore and I realized when I stood I'd feel extremely unwell. Previously I never made the connection before! I went to a few doctors complaining of heart palpitations, but they didn't do much nor really care whatsoever. They just told me to stand up slower, keep hydrated and blamed everything on mitral valve prolapse.../sigh
I had quit my sitting job and was working at a retail store where I was required to stand my entire shift. There were no stools like at my other job.... After about a year of that, I just couldn't even go into work anymore and was calling off often. Standing at the counter, waiting on customers was almost impossible on some days. I'd feel soo ill and I would actually lay down on the ground in the jewelry department in between customers. Since we did not have air conditioning in our house, my body was constantly in that heat intolerant state. My heart would be racing as soon as I woke up and I felt very dizzy and lightheaded. I finally was forced to quit my job and haven't worked outside of the house ever since (6+ years now). Standing for long periods of time (like an 8 hour shift) is impossible.
A few months after quitting work, my sister found out she had a malignant brain tumor and I went into a dark depression for months. I did not want to eat, talk or even leave the house. Only after she was given a good prognosis, did I come out of my shell. This had such a huge affect on me as I thought I was going to lose my sister. My sister and I had been through A LOT because we shared a room our entire lives from age 6 until I moved out when I got married at 19.
May 2007 (Age 23)- My health continued to get worse and worse. I was sleeping 10-12 hours a day and could barely even get out of bed. I went to the ER a few times feeling extremely ill but was always dismissed as a druggy or looking to get pain pills. No one took me seriously whatsoever!
I decided to start going down the "natural" doctor path. Mainstream docs were not helping me one bit. They didn't even want to talk to me.
November 2007- I began to develop numbness/burning in my left leg from my hip down to the top of my knee cap. I also started to lose my hair after taking potassium iodide. A dermatologist diagnosed it as alopecia areata. I had several “spots”. One was very large covering the entire left frontal area. The second spot was on the back of my head. These spots lasted for about a year and then cleared up after removing my amalgam fillings and begin chelating.
Around this time, I was also diagnosed with partial diabetes insipidus. I took dDAVP which helped alleviate the frequent urination, but did not help me with any of my other symptoms. A pituitary MRI with contrast was done and it was normal except for some issues with my sinuses.
Labwork showed low normal B12 levels. B12 injections helped with the numbness in my extremities.
December 2008 (Age 24)- While chelating, I started to develop hives and itchiness. I felt absolutely terrible. I was losing a lot of weight really fast. General blood work revealed a non-detectable TSH level, normal T4 levels, slightly elevated liver enzymes and high eosinophils. I was told to see an endo to have my hormones further evaluated. I believe this was all from DMSA, but at the time I did not know this!
March 2009 (Age 24) I was finally diagnosed with adrenal insufficiency after a mildly elevated ACTH level. I began taking hydrocortisone and florinef, which immediately resolved a lot of the symptoms I had been suffering with for almost 7 years. Unfortunately the tachycardia upon standing was not resolved. I was told by my natural doctor that he wanted nothing to do with my heart issues and that I needed to see a cardiologist. Meanwhile, POTS was the entire reason why I saw him... Ugh!
Approx. June 2009- Allergy testing showed sensitivities to gluten, wheat, dairy, eggs, tomatoes, strawberries and yeast. For about a year I followed a strict diet that restricted all of these foods. I never noticed a difference at all. I watch my dairy intake since I am lactose intolerant. I stopped eating gluten free in 2013.
August 2009- (Age 25)- I saw a local EP who had some knowledge of POTS. I wore a holter monitor for 24 hours, had an echocardiogram and EKG which all showed a normal heart rhythm, but with periods of tachycardia (when I was standing). A tilt-test was ordered, but in the meanwhile I was placed on midodrine. It made me feel worse and I discontinued it within 3 days. The side effects were unbearable. It made me feel very jittery, anxious, manic and I would have likely killed myself if I had stayed on the drug. It was that bad.
The results of my tilt-test were very conclusive and I certainly had POTS. It's important to note that for this TTT, I was taking Hydrocortisone, florinef, DDAVP and I was also hooked up to a Saline IV.
Since the midodrine failed, my doc had me try a low dose beta blocker (metoprolol ER) and that made a big difference. He was shocked to hear I had such positive effects with the beta blocker and inferred I likely had a problem with catecholamine levels. Yet he refused to test my catecholamine levels because "they cannot be accurately interpreted". I would later find out this is just flat out wrong and my POTS doctor was really quite crappy.
February 2010- Complications from the beta blocker started to creep up slowly. I started to feel a lot more fatigued throughout the day and I developed chilblains on my toes.
Unfortunately once the warmer weather came around, the beta blocker's positive effects were quickly fading away. The beta blocker did absolutely nothing to help with the heat intolerance problems and I was right back where I started. My standing heart rates were still way too high when I did any activity that requires standing, lifting or bending down.
June 2010- Another tilt-table test was performed at Cleveland Clinic with catecholamines. This test confirmed the POTS diagnosis, but also showed I have elevated norepinephrine levels upon standing.
After a poor experience dealing with Cleveland Clinic, I pretty much gave up on pursuing anything further with my health. I took a long break with my health and did not see a single doc for over a year.
December 2011-I became quite sick with what I would find out in the coming weeks was actually strep throat. Since I didn't realize I had strep, I did not go to the doctors and it was untreated. I developed erythema nodosum and arthritis from strep throat. It was a horrific few months of my life and do not know yet if there will be any long term effects from the strep.
June 2012- I'm still the same as I was in 2009-2010. Despite all of my research and trying different things nothing has really changed much over the years since going on hydrocortisone. Chelation helped briefly, but since I get severe side effects from it, I haven't gone back to doing it. I have nearly abandoned the whole idea which is why all the chelation stuff has been removed from my blog.
I no longer think there's anything I can do to fix myself. It's taken quite a few years and a lot of reflection to finally come to this conclusion.
October 2012- I was supernaturally healed of adrenal insufficiency and for the first time in many years was able to cold turkey come off of hydrocortisone. I went to a prayer meeting and was prayed for. I felt a warmth in my core. I didn't think anything of it and had forgotten to take my pills. Weeks went by and I still didn't need it. There is no other explanation except that God healed them that day when I got prayer!
March 2015- For the past 2.5 years I have 100% been following God and seeking Jesus for healing. I am no longer researching, doing treatment protocols or anything at all. If I am healed it will 100% be by the power of God. My weapon is now prayer and faith in Jesus name. Doctors and men failed me. Science and amateur research failed me. Now I look to the Creator, my Lord and Savior for life. I no longer live for myself, but for God. Everything I used to do, I no longer care about at all. This is the power of the Cross and a testimony to what the Holy Spirit can do in one's life.
So far from what I've seen, God has a better track record than any of the lead researchers and doctors at Vanderbilt, Cleveland Clinic or Mayo Clinic. That's something to think about. I know of at least 3 women who have been healed of POTS.
Don't allow the faults of man to smear the name of and/or ruin your relationship with God...Don't allow what someone else did to you, keep you from being saved and reconciled back to God. Doing so gives these people waaay to much power.
4th Grade (1994)- I had a lot of anxiety issues. I would get panic attacks for no reason whatsoever. I was so fearful of everything. Most of my days were spent in the guidance counselor's office trying to sort out what was going on in my head. I still to this day have no idea what was going on. All I know is that I was terrified all the time. School was so scary for me, but it never had this much of affect on this until 4th grade.
6th Grade (1996)- I started to have the panic attacks again. I didn't want to go to school anymore. I'd cry every Sunday night and try to get out of going on Monday. There were a few times I just broke down and cried in class. My grandmother died unexpectedly this year, but I think I just used that as an excuse for my feelings. It was an easy out.
11th Grade (Summer 2000)- During marching band camp, I experienced severe heat intolerance for the first time. I nearly fainted, passed out every single day outside. The 'band moms' told me that I looked very pale, blue and I knew I felt better when I could sit down. Since I played trumpet I had to keep my arms way up, which made me feel so much worse. I kept water with me at all times and wore as little amount of clothing as possible. Still this was not enough to keep me from feeling ill. I had a terrible sore throat and just thought that the lightheadedness was from being sick.
Fall 2000- At some point I went to the doctors because I was having extreme fatigue and felt awful. I knew something was wrong when I started sleeping during class. I would sleep at any given time (bus, lunch, during class). Finally my PCP told me I had EBV and to take it easy for a while. I was told to quit marching band and to not partake in physical education at all.
I also became anorexic right around this time. I would overexercise and eat very little foods. The heat intolerance and lightheadedness continued.
Eventually my menstrual cycles stopped. I assume from the tremendous amount of stress my body was under since I was not eating properly. They were gone for about a year's time and only came back after I started to eat better. They have always been very regular since with a few exceptions here and there. Because of my anorexia, all of my other symptoms were blamed on that, even though I told my doctors these symptoms started before. No one listened.
May 2001-Still very much anorexic and thin, I went to my ex boyfriend's prom at another high school. It was soooo hot and I nearly fainted multiple times on the way there. Waiting in line to take pictures was soo difficult. I just pretended everything was okay and once we got into air conditioning, I was feeling much better. At this time, I was having severe digestive issues and had to take digestive enzymes when eating anything. This is when my lactose intolerance hit its peak.
June 2001-My friend and I went to our school picnic at Kennywood, which is a local amusement park. It was a very hot June day. I knew immediately upon getting on the school bus, that I was not feeling well. I had extreme nausea and a feeling like someone was punching me repeatedly in the stomach.
As soon as we got there, we decided to ride our first roller coaster which I've always enjoyed. We were standing in line when I suddenly felt myself become very weak and heavy feeling. As soon as I told my friend that I was feeling ill, I crashed down to the pavement. I could not see anything nor hear anything around me, yet I know that I was conscious, but could not lift myself up. My friend said that I turned blue and ran to get some help. I was taken to the first aid station where my BP was 60/40 and was told that I should rest and that I was probably just dehydrated. I slept for nearly 4 ½ hours and thought that I had only slept for like 20 minutes.
Even after getting fluids in me and resting, I continued to fall down and feel extremely nauseous all day long and my parents picked me up from the amusement park.
This is the first and last time I have ever “fainted”. Looking back though I often wonder if this was my first adrenal crisis. I can't believe I was not taken to the hospital. Really quite shocking to me.
Fall/Winter 2001-This was my senior year of high school. It took all my effort and will power to make it from class to class. I knew when it came time to switch classes I'd have to suck it up and make it up the stairs. Some classes I had to go up 3 floors, which would nearly kill me. Once I got in class, sat down, I'd feel much much better. I had major issues dealing with any type of stress. I'd begin to shake, feel nauseous, extremely cold and terrified. My anxiety issues started to show up again. Despite all of these problems, I did very well in school.
Age 18-20 After high school, I decided to go to community college and work. At first I just had a part-time job and then I started working full-time. I don't know how I even did all of this... Since I worked and lived in air conditioning, my heat intolerance wasn't as noticeable. My job allowed me to sit down most of the day, so that was helpful too. I just knew if I had to stand for a long time or go outside for any length of time, I felt very sick.
Age 20-22 Things began to progress and I continue to get worse. My attempts to keep up were not working anymore and I realized when I stood I'd feel extremely unwell. Previously I never made the connection before! I went to a few doctors complaining of heart palpitations, but they didn't do much nor really care whatsoever. They just told me to stand up slower, keep hydrated and blamed everything on mitral valve prolapse.../sigh
I had quit my sitting job and was working at a retail store where I was required to stand my entire shift. There were no stools like at my other job.... After about a year of that, I just couldn't even go into work anymore and was calling off often. Standing at the counter, waiting on customers was almost impossible on some days. I'd feel soo ill and I would actually lay down on the ground in the jewelry department in between customers. Since we did not have air conditioning in our house, my body was constantly in that heat intolerant state. My heart would be racing as soon as I woke up and I felt very dizzy and lightheaded. I finally was forced to quit my job and haven't worked outside of the house ever since (6+ years now). Standing for long periods of time (like an 8 hour shift) is impossible.
A few months after quitting work, my sister found out she had a malignant brain tumor and I went into a dark depression for months. I did not want to eat, talk or even leave the house. Only after she was given a good prognosis, did I come out of my shell. This had such a huge affect on me as I thought I was going to lose my sister. My sister and I had been through A LOT because we shared a room our entire lives from age 6 until I moved out when I got married at 19.
May 2007 (Age 23)- My health continued to get worse and worse. I was sleeping 10-12 hours a day and could barely even get out of bed. I went to the ER a few times feeling extremely ill but was always dismissed as a druggy or looking to get pain pills. No one took me seriously whatsoever!
I decided to start going down the "natural" doctor path. Mainstream docs were not helping me one bit. They didn't even want to talk to me.
November 2007- I began to develop numbness/burning in my left leg from my hip down to the top of my knee cap. I also started to lose my hair after taking potassium iodide. A dermatologist diagnosed it as alopecia areata. I had several “spots”. One was very large covering the entire left frontal area. The second spot was on the back of my head. These spots lasted for about a year and then cleared up after removing my amalgam fillings and begin chelating.
Around this time, I was also diagnosed with partial diabetes insipidus. I took dDAVP which helped alleviate the frequent urination, but did not help me with any of my other symptoms. A pituitary MRI with contrast was done and it was normal except for some issues with my sinuses.
Labwork showed low normal B12 levels. B12 injections helped with the numbness in my extremities.
December 2008 (Age 24)- While chelating, I started to develop hives and itchiness. I felt absolutely terrible. I was losing a lot of weight really fast. General blood work revealed a non-detectable TSH level, normal T4 levels, slightly elevated liver enzymes and high eosinophils. I was told to see an endo to have my hormones further evaluated. I believe this was all from DMSA, but at the time I did not know this!
March 2009 (Age 24) I was finally diagnosed with adrenal insufficiency after a mildly elevated ACTH level. I began taking hydrocortisone and florinef, which immediately resolved a lot of the symptoms I had been suffering with for almost 7 years. Unfortunately the tachycardia upon standing was not resolved. I was told by my natural doctor that he wanted nothing to do with my heart issues and that I needed to see a cardiologist. Meanwhile, POTS was the entire reason why I saw him... Ugh!
Approx. June 2009- Allergy testing showed sensitivities to gluten, wheat, dairy, eggs, tomatoes, strawberries and yeast. For about a year I followed a strict diet that restricted all of these foods. I never noticed a difference at all. I watch my dairy intake since I am lactose intolerant. I stopped eating gluten free in 2013.
August 2009- (Age 25)- I saw a local EP who had some knowledge of POTS. I wore a holter monitor for 24 hours, had an echocardiogram and EKG which all showed a normal heart rhythm, but with periods of tachycardia (when I was standing). A tilt-test was ordered, but in the meanwhile I was placed on midodrine. It made me feel worse and I discontinued it within 3 days. The side effects were unbearable. It made me feel very jittery, anxious, manic and I would have likely killed myself if I had stayed on the drug. It was that bad.
The results of my tilt-test were very conclusive and I certainly had POTS. It's important to note that for this TTT, I was taking Hydrocortisone, florinef, DDAVP and I was also hooked up to a Saline IV.
Since the midodrine failed, my doc had me try a low dose beta blocker (metoprolol ER) and that made a big difference. He was shocked to hear I had such positive effects with the beta blocker and inferred I likely had a problem with catecholamine levels. Yet he refused to test my catecholamine levels because "they cannot be accurately interpreted". I would later find out this is just flat out wrong and my POTS doctor was really quite crappy.
February 2010- Complications from the beta blocker started to creep up slowly. I started to feel a lot more fatigued throughout the day and I developed chilblains on my toes.
Unfortunately once the warmer weather came around, the beta blocker's positive effects were quickly fading away. The beta blocker did absolutely nothing to help with the heat intolerance problems and I was right back where I started. My standing heart rates were still way too high when I did any activity that requires standing, lifting or bending down.
June 2010- Another tilt-table test was performed at Cleveland Clinic with catecholamines. This test confirmed the POTS diagnosis, but also showed I have elevated norepinephrine levels upon standing.
After a poor experience dealing with Cleveland Clinic, I pretty much gave up on pursuing anything further with my health. I took a long break with my health and did not see a single doc for over a year.
December 2011-I became quite sick with what I would find out in the coming weeks was actually strep throat. Since I didn't realize I had strep, I did not go to the doctors and it was untreated. I developed erythema nodosum and arthritis from strep throat. It was a horrific few months of my life and do not know yet if there will be any long term effects from the strep.
June 2012- I'm still the same as I was in 2009-2010. Despite all of my research and trying different things nothing has really changed much over the years since going on hydrocortisone. Chelation helped briefly, but since I get severe side effects from it, I haven't gone back to doing it. I have nearly abandoned the whole idea which is why all the chelation stuff has been removed from my blog.
I no longer think there's anything I can do to fix myself. It's taken quite a few years and a lot of reflection to finally come to this conclusion.
October 2012- I was supernaturally healed of adrenal insufficiency and for the first time in many years was able to cold turkey come off of hydrocortisone. I went to a prayer meeting and was prayed for. I felt a warmth in my core. I didn't think anything of it and had forgotten to take my pills. Weeks went by and I still didn't need it. There is no other explanation except that God healed them that day when I got prayer!
March 2015- For the past 2.5 years I have 100% been following God and seeking Jesus for healing. I am no longer researching, doing treatment protocols or anything at all. If I am healed it will 100% be by the power of God. My weapon is now prayer and faith in Jesus name. Doctors and men failed me. Science and amateur research failed me. Now I look to the Creator, my Lord and Savior for life. I no longer live for myself, but for God. Everything I used to do, I no longer care about at all. This is the power of the Cross and a testimony to what the Holy Spirit can do in one's life.
So far from what I've seen, God has a better track record than any of the lead researchers and doctors at Vanderbilt, Cleveland Clinic or Mayo Clinic. That's something to think about. I know of at least 3 women who have been healed of POTS.
Don't allow the faults of man to smear the name of and/or ruin your relationship with God...Don't allow what someone else did to you, keep you from being saved and reconciled back to God. Doing so gives these people waaay to much power.
Chelation Round 16?
I lost track of what chelation round I am on right now. haha Anyway this time around I decided to do something a little bit different. First I wanted to control the hives/rashes better because they really bother me. Taking benedryl makes me feel groggy for hours, which is not an option. What's the point in taking something which then gives me such incredible fatigue I can't do a damn thing? The last time I took 1 Benedryl I could not move my legs. That is how incredibly tired it made me feel.
My husband found out that the itchiness could be an issue with sulfur. I had come across this before in the past, but the only solution people had was to avoid sulfury foods. Well I cannot avoid the sulfur in the chelation drugs, so that wasn't of much use for me. I began taking Pantethine and L-Histidine along with some Molybdenum to see what would happen.
I was a little scared because Histidine was high normal in my NutrEval test, so I did not know if this would be good. Histidine is converted to Histamine and I was worried. haha Anyway, to my surprise I did not have rashes nor hives this time around. I continued to take the Quercetin along with the others.
There is some evidence that supplementing with Histidine can increase zinc excretion, so I started taking more of that to be on the safe side. I have to take my zinc with a big meal or I will vomit it all right back up. Yuck! I am very pleased with this round of chelation. I felt a little run down yesterday but overall, I felt pretty much my normal self with POTS. My plan is to continue using DMSA until I get the DMPS from my local doctor.
My appointment is March 4, so that's not too far away!
This round I also took 50mg of DMSA every 2 hours during the day. Then at night I increased it to every 4 hours because I needed to get some more rest. Every 3 hours at night was killing me and I would wake up every hour thinking I missed the pill. It was a nightmare.
My husband found out that the itchiness could be an issue with sulfur. I had come across this before in the past, but the only solution people had was to avoid sulfury foods. Well I cannot avoid the sulfur in the chelation drugs, so that wasn't of much use for me. I began taking Pantethine and L-Histidine along with some Molybdenum to see what would happen.
I was a little scared because Histidine was high normal in my NutrEval test, so I did not know if this would be good. Histidine is converted to Histamine and I was worried. haha Anyway, to my surprise I did not have rashes nor hives this time around. I continued to take the Quercetin along with the others.
There is some evidence that supplementing with Histidine can increase zinc excretion, so I started taking more of that to be on the safe side. I have to take my zinc with a big meal or I will vomit it all right back up. Yuck! I am very pleased with this round of chelation. I felt a little run down yesterday but overall, I felt pretty much my normal self with POTS. My plan is to continue using DMSA until I get the DMPS from my local doctor.
My appointment is March 4, so that's not too far away!
This round I also took 50mg of DMSA every 2 hours during the day. Then at night I increased it to every 4 hours because I needed to get some more rest. Every 3 hours at night was killing me and I would wake up every hour thinking I missed the pill. It was a nightmare.
Changed the Look
Today I decided to change the look of the blog. The template I was using was soo ancient and I was pretty sick of it. Let me know if you are having any problems with reading or seeing anything. I tried to make the colors reading friendly.
Edit: I also wanted to add that I am getting rid of the contact me. I NEVER check that email, so it is essentially worthless to have that listed. If you want to talk to me, then the best way to do so is just by making a comment on my blog. I get notification in my main email anytime a comment is made. Sorry for the inconvenience. I'm just trying to be more honest with myself here. hehe
Edit: I also wanted to add that I am getting rid of the contact me. I NEVER check that email, so it is essentially worthless to have that listed. If you want to talk to me, then the best way to do so is just by making a comment on my blog. I get notification in my main email anytime a comment is made. Sorry for the inconvenience. I'm just trying to be more honest with myself here. hehe
Thursday, February 17, 2011
An Interesting Website
My husband found this website and I wanted to pass it along to my readers. Be sure to do your own research and discuss any risks with your doctor before beginning any chelation protocol. I'm not a doctor!
The website is called Mercout.com. The website supplies the patient with a 30 day supply of DMPS. The only difference is that you must prove that you have elevated mercury levels in your body with laboratory testing. Mercout.com offers a test you can buy through them if you do not have a test, but they will also accept a test you already had done previously. I think that's pretty awesome! Since DMPS is prescription, this is necessary for the company to cover their butt.
The website says....
I'm starting to think that I need DMPS to get the mercury out rather than DMSA. Studies show that DMSA pulls only 1/5 or 1/10 the amount of mercury than DMPS. This challenge test was complete with a small dose (~65mg) of DMPS injected in my arm very slowly. I really doubt DMSA is grabbing anywhere near 30mcg of mercury every 4 hours. I'd love to prove that, but I just don't have the $$ to throw around to experiment.
It got warm today and I'm already getting symptomatic. This spring/summer is going to be rough unless I get this metal out of me. I'm not about to chelated for 8 years to have minimal improvements.
Speaking of which, I am chelating right now. I'm taking 50mg of DMSA every 2 hours. The Cutler folks will think I'm crazy for even considering such a high dose, but in his own book he says you need high doses to get this crap out. 5mg every 4 hours isn't going to do anything to get mercury out of your body. It's like throwing a little cup of water on a large fire. You need a bucket of water to even begin to put the fire out. Have fun with your cups of water...
The website is called Mercout.com. The website supplies the patient with a 30 day supply of DMPS. The only difference is that you must prove that you have elevated mercury levels in your body with laboratory testing. Mercout.com offers a test you can buy through them if you do not have a test, but they will also accept a test you already had done previously. I think that's pretty awesome! Since DMPS is prescription, this is necessary for the company to cover their butt.
The website says....
Step 2: Physician Review of Your Mercury Test Results
I definitely have laboratory results that show I have elevated mercury levels in my body, so I have no issues with "proving" it.If the urine test by the independent laboratory indicates that your mercury level is elevated, it is very likely our physicians will recommend that you begin to remove this toxic substance using the MercOut Detoxification Program.
I'm starting to think that I need DMPS to get the mercury out rather than DMSA. Studies show that DMSA pulls only 1/5 or 1/10 the amount of mercury than DMPS. This challenge test was complete with a small dose (~65mg) of DMPS injected in my arm very slowly. I really doubt DMSA is grabbing anywhere near 30mcg of mercury every 4 hours. I'd love to prove that, but I just don't have the $$ to throw around to experiment.
It got warm today and I'm already getting symptomatic. This spring/summer is going to be rough unless I get this metal out of me. I'm not about to chelated for 8 years to have minimal improvements.
Speaking of which, I am chelating right now. I'm taking 50mg of DMSA every 2 hours. The Cutler folks will think I'm crazy for even considering such a high dose, but in his own book he says you need high doses to get this crap out. 5mg every 4 hours isn't going to do anything to get mercury out of your body. It's like throwing a little cup of water on a large fire. You need a bucket of water to even begin to put the fire out. Have fun with your cups of water...
Saturday, February 12, 2011
Who Is Really Recovering?
My husband and I have started looking for real success stories of people who recovered from mercury poisoning. I am not talking about "feeling a little better". I am talking about people who are able to work again, live a normal life and don't have any complaints on a daily basis. We have found there aren't that many people out there who are recovering, especially those following Dr. Cutler protocol. I have begun to question whether or not this is doing anything for me other than make me sicker and sicker.
Obviously something is not right if people are not getting better. The Frequent Dose Chelation yahoo group is full of the exact same people I saw 2 years ago and everyone is still sick, complaining of this and that. Sure some people are posting to help others, but most of them are there because they are sick. If it is mercury causing the issues and chelating with low dose DMSA and ALA isn't working, then we need to reevaluate our chelation protocol. Doing the same thing over and over again, expecting different results is the definition of insanity. haha If Cutler's protocol isn't working, then I'll abandon it completely and start doing something else. I have no issue with admitting I was wrong.
The only people we have both seen get healthy (not just "better" which is usually not much better at all) were those who went with oral DMPS or IV DMPS. This makes me really wonder.
I want to try oral DMPS and see how it goes. I have an appointment with one of the local doctors I used to see years ago. He's the one who did the DMPS challenge test, so at least he knows of DMPS. It's pricey and I have no idea how I'm going to afford this, but I have to try! DMSA is just not cutting it and I don't want to be here 3 years from now saying the same thing. Damnit I want to be healthy and never have to read any of these stupid health forums ever again.
Obviously something is not right if people are not getting better. The Frequent Dose Chelation yahoo group is full of the exact same people I saw 2 years ago and everyone is still sick, complaining of this and that. Sure some people are posting to help others, but most of them are there because they are sick. If it is mercury causing the issues and chelating with low dose DMSA and ALA isn't working, then we need to reevaluate our chelation protocol. Doing the same thing over and over again, expecting different results is the definition of insanity. haha If Cutler's protocol isn't working, then I'll abandon it completely and start doing something else. I have no issue with admitting I was wrong.
The only people we have both seen get healthy (not just "better" which is usually not much better at all) were those who went with oral DMPS or IV DMPS. This makes me really wonder.
I want to try oral DMPS and see how it goes. I have an appointment with one of the local doctors I used to see years ago. He's the one who did the DMPS challenge test, so at least he knows of DMPS. It's pricey and I have no idea how I'm going to afford this, but I have to try! DMSA is just not cutting it and I don't want to be here 3 years from now saying the same thing. Damnit I want to be healthy and never have to read any of these stupid health forums ever again.
Friday, February 11, 2011
The Rashes Have Begun
When I chelated the first time around around late 2008, I started to get these horrific rashes that just made me want to jump out of my own skin. At the time, I wasn't sure what was going on and thought maybe it was a food allergy or something. Well I can now say without a doubt that it is either the actual chelation itself, the metals coming out of the body or DMSA. Maybe even all of the above! They show up even on days where I'm NOT chelating, so I'm not 100% sure what's up.
When I had these rashes the first time around, my eosinophils were through the roof. I suspect they are this time too. Like the last time, I have Dermatographic urticaria. If I scratch an area then 10 more hives pop up and it's a never ending vicious cycle. The itching is so bad that it makes me twitch at times...
So what to do?
I really do not know what to do. I cannot live on benedryl or zyrtec every day of my life. Benedryl isn't even an option unless I'm about to go to sleep. It makes me soo sleepy. If I can find the camera, I'm going to include some pictures of the rash and edit my post to include them.
Today I feel very tired too. I woke up and just felt exhausted which is not normal for me at all! My face even feels puffy too. I'm trying to work but it's pretty tough. I am not on round either. I think I stopped 2-3 days ago because the headaches were getting out of hand.
I really wish I could try DMPS and give up on DMSA. Makes me wonder if it's doing more harm than good.
When I had these rashes the first time around, my eosinophils were through the roof. I suspect they are this time too. Like the last time, I have Dermatographic urticaria. If I scratch an area then 10 more hives pop up and it's a never ending vicious cycle. The itching is so bad that it makes me twitch at times...
So what to do?
I really do not know what to do. I cannot live on benedryl or zyrtec every day of my life. Benedryl isn't even an option unless I'm about to go to sleep. It makes me soo sleepy. If I can find the camera, I'm going to include some pictures of the rash and edit my post to include them.
Today I feel very tired too. I woke up and just felt exhausted which is not normal for me at all! My face even feels puffy too. I'm trying to work but it's pretty tough. I am not on round either. I think I stopped 2-3 days ago because the headaches were getting out of hand.
I really wish I could try DMPS and give up on DMSA. Makes me wonder if it's doing more harm than good.
Sunday, January 2, 2011
Chelating Again
Yesterday I started chelating again and I remember why I hate it so much. Terrible insomnia, Mild Fever and my heart rates sitting were as high as 130! This morning I took my BP sitting and it was 121/80 HR 122. Scared me a bit. I have no idea why this happens when I take DMSA, but it is just terrible. If this doesn't settle down, then I might have to stop again and try ALA or something.
Thursday, December 9, 2010
The McComb's Plan...What it's Done
About 2 months ago at this rate, I went on the McComb's Diet Plan. I mentioned it in one of my posts in November. You can read about the plan on the doctor's own website. I am not taking his supplements nor doing the sweating protocol on his website. Just the diet. Wanted to make sure that was clear...hehe
What has it done?
Eliminating sugar has been tough, but I have been very successful with it and am loving the results. I dropped about 10-13 pounds depending upon the time of day I weigh myself. This was really unexpected and not why I even did the diet in the first place. I do miss my Chai Tea Lattes at Starbucks, but the benefits of the diet far outweigh any emotional pleasure I'd get from drinking a Chai. haha
Aside from the weight loss, my skin is looking really good. Over the past 3-4 years my skin has been way more prone to break outs for some reason. Especially on my forehead and near the temples. Well I can say without any doubt that this diet has really helped my skin. I still have terrible problems with blackheads, but at least the pimples are gone.
My heart is no different. Sorry no cure for POTS here! haha The first week, I was having really strong sugar cravings and the dizziness (white outs) upon standing seemed to be worse. However that has normalized now and I'm not getting that anymore.
The mid afternoon crashes or need to take a nap is now gone. It took at least 2-3 weeks on the diet for this to occur, but I no longer need to take a nap mid-day. I think this has to do with blood sugar, but am really not all that sure.
This diet is very similar to how I was eating when I went on Dr. Mercola's Carbo Nutritional Diet many years ago. Interestingly I felt pretty good back then but the POTS was kicking my butt. I've also tried to lower my salt intake a bit just to see. My legs, especially the calves and ankles still seem puffy to me.
Will Likely Continue On
I plan to continue eating like this, but might allow myself to have 1 treat a week. I can let that be whatever I want, but it can only be 1. However I will certainly put an end to that if I start to notice problems.
What I Found Out...
I have found out that dairy is a major issue for me. My husband experimented making his own kefir and yogurt. Both of them made me so ill that I realize I must be allergic to the actual milk protein (Casein) rather than just being lactose intolerant. There isn't supposed to be any lactose in either of those (from what I've read), so it makes little sense that in 4-5 hours after ingesting, I get the typical bloating, gas and intense stomach pain. For 3 days after, I was passing pale stools that was likely undigested milk proteins and fats. Sorry for the details, but something is not right and that was a huge wake up call for me. No more dairy!
We will see how this goes.
In regards to my labs, I haven't heard anything. My doctor may be holding them until we see him in office. Money is tight so I have no idea when that will be at this rate.
What has it done?
Eliminating sugar has been tough, but I have been very successful with it and am loving the results. I dropped about 10-13 pounds depending upon the time of day I weigh myself. This was really unexpected and not why I even did the diet in the first place. I do miss my Chai Tea Lattes at Starbucks, but the benefits of the diet far outweigh any emotional pleasure I'd get from drinking a Chai. haha
Aside from the weight loss, my skin is looking really good. Over the past 3-4 years my skin has been way more prone to break outs for some reason. Especially on my forehead and near the temples. Well I can say without any doubt that this diet has really helped my skin. I still have terrible problems with blackheads, but at least the pimples are gone.
My heart is no different. Sorry no cure for POTS here! haha The first week, I was having really strong sugar cravings and the dizziness (white outs) upon standing seemed to be worse. However that has normalized now and I'm not getting that anymore.
The mid afternoon crashes or need to take a nap is now gone. It took at least 2-3 weeks on the diet for this to occur, but I no longer need to take a nap mid-day. I think this has to do with blood sugar, but am really not all that sure.
This diet is very similar to how I was eating when I went on Dr. Mercola's Carbo Nutritional Diet many years ago. Interestingly I felt pretty good back then but the POTS was kicking my butt. I've also tried to lower my salt intake a bit just to see. My legs, especially the calves and ankles still seem puffy to me.
Will Likely Continue On
I plan to continue eating like this, but might allow myself to have 1 treat a week. I can let that be whatever I want, but it can only be 1. However I will certainly put an end to that if I start to notice problems.
What I Found Out...
I have found out that dairy is a major issue for me. My husband experimented making his own kefir and yogurt. Both of them made me so ill that I realize I must be allergic to the actual milk protein (Casein) rather than just being lactose intolerant. There isn't supposed to be any lactose in either of those (from what I've read), so it makes little sense that in 4-5 hours after ingesting, I get the typical bloating, gas and intense stomach pain. For 3 days after, I was passing pale stools that was likely undigested milk proteins and fats. Sorry for the details, but something is not right and that was a huge wake up call for me. No more dairy!
We will see how this goes.
In regards to my labs, I haven't heard anything. My doctor may be holding them until we see him in office. Money is tight so I have no idea when that will be at this rate.
Wednesday, December 1, 2010
What I do in my Spare Time!
I wanted to make a happy post today on my blog! What do I do in my spare time?
Well I quite honestly I lead a pretty sedentary lifestyle. Every morning I look forward to my morning cup of coffee. As I get older, I am finding that I am actually developing a palate for coffee. I am starting to become a coffee snob where I only use a Coffee Press these days to make coffee!
I absolutely love my Bodum Coffee Press and don't know what I'd do without it. My mornings would be quite sad. Even though I really like coffee, making it can be annoying. One morning I made the comment, "I wish there was a machine that made coffee". My husband thought that was the most hilarious thing because DUH there's tons of machines that make coffee. LOL What I really meant was, I wish there was a robot that could make me coffee in the coffee press. That line has now become a family joke. "Man I really wish there was a machine that made coffee". I'm glad I entertain my family.
The one other thing that I love even more than coffee is singing. If I tallied up how much I sing every day it's likely pushing 8 hours. I am not kidding at all and my poor husband has to hear it all the time. haha My mother was always singing so I think that kind of stuck with me. She would listen to various singers like Bette Midler and Celine Dion. I'm sure there were others, but that's all I can remember. My family went to church every Saturday night and I started to realize that I had a really good singing voice. However with my lack of self-confidence I had been afraid to let anyone know about it and sort of hid it. A few months ago, I decided to record myself to see if I sound good on tape. To my surprise I think I sound pretty darn good for having very little official vocal training.
I really wish to write some music and at least put it out on the internet for people to download. Singing makes me feel so good. It's like all of my problems go away and it is a major destressing tool I use. If you are interested, I have put up a few covers on Youtube. Let me know what you think--if you hate it that's ok. There is always room for improvement with singing. My trills, slurs, vibrato and hitting high notes could be much improved and I hope to take vocal lessons again one day. My last vocal teacher was pretty terrible and I sang better than her.
Well I quite honestly I lead a pretty sedentary lifestyle. Every morning I look forward to my morning cup of coffee. As I get older, I am finding that I am actually developing a palate for coffee. I am starting to become a coffee snob where I only use a Coffee Press these days to make coffee!
I absolutely love my Bodum Coffee Press and don't know what I'd do without it. My mornings would be quite sad. Even though I really like coffee, making it can be annoying. One morning I made the comment, "I wish there was a machine that made coffee". My husband thought that was the most hilarious thing because DUH there's tons of machines that make coffee. LOL What I really meant was, I wish there was a robot that could make me coffee in the coffee press. That line has now become a family joke. "Man I really wish there was a machine that made coffee". I'm glad I entertain my family.
The one other thing that I love even more than coffee is singing. If I tallied up how much I sing every day it's likely pushing 8 hours. I am not kidding at all and my poor husband has to hear it all the time. haha My mother was always singing so I think that kind of stuck with me. She would listen to various singers like Bette Midler and Celine Dion. I'm sure there were others, but that's all I can remember. My family went to church every Saturday night and I started to realize that I had a really good singing voice. However with my lack of self-confidence I had been afraid to let anyone know about it and sort of hid it. A few months ago, I decided to record myself to see if I sound good on tape. To my surprise I think I sound pretty darn good for having very little official vocal training.
I really wish to write some music and at least put it out on the internet for people to download. Singing makes me feel so good. It's like all of my problems go away and it is a major destressing tool I use. If you are interested, I have put up a few covers on Youtube. Let me know what you think--if you hate it that's ok. There is always room for improvement with singing. My trills, slurs, vibrato and hitting high notes could be much improved and I hope to take vocal lessons again one day. My last vocal teacher was pretty terrible and I sang better than her.
Monday, November 29, 2010
Getting some Labs Done
Well today I went in to get some labs done before we make the journey to see the doctor. We travel 6 hours to see a doctor that knows what he is talking about and in the very least listens to my concerns. Does he have the answers to everything? Absolutely not. He won't even touch the POTS issue, but at least I have him there for hydrocortisone, florinef and really anything else hormone related.
This time I asked him to test some basic things and a few not so basic things that I am interested in. I told him not to even bother with my thyroid because I have NO intentions of taking thyroid meds regardless of my results.
I got the following tested:
Fasting insulin
CMP (this is for electrolytes, glucose etc)
CBC with diff.
Ferritin
Vitamin D
Total Testosterone
Free Testosterone
Antiparietal cells antibodies test
Intrinsic Factor Blocking Antibody, Serum
Urine Methylmalonic Acid
I wanted to check my fasting insulin again because the doctor in Michigan checked it and it was kind of high. CMP is good to check my electrolytes and other random things. I haven't had a CBC checked for at least a year, so this is long overdue. I don't expect to see anything out of the ordinary but it is important to spot check.
Ferritin and Vitamin D are both going to be awful. The doctor threw those ones in on his own. I expect my ferritin to be around 20 and my vitamin D to be about the same. Not good, but I hate taking those as it makes me feel toxic.
Total Testosterone and Free Testosterone was something that I added in. Since I'm taking DHEA, I wanted to make sure it's not too much. I don't think it is but I think it is important to verify this with labs to be safe.
The last 3 tests are all for B12 deficiency and pernicious anemia. I wanted to finally put this PA idea to rest. Most who have PA will have either one of those antibodies, so we will see. I also got the urine MMA checked to see if this correlates with the MMA test that Genova Diagnostics did in the NutrEval test.
I don't know if I'll get the results to these before we see him, but I might email the office manager and ask her to send them so I can look them over before we come in. This way I can have any questions ready. :)
This time I asked him to test some basic things and a few not so basic things that I am interested in. I told him not to even bother with my thyroid because I have NO intentions of taking thyroid meds regardless of my results.
I got the following tested:
Fasting insulin
CMP (this is for electrolytes, glucose etc)
CBC with diff.
Ferritin
Vitamin D
Total Testosterone
Free Testosterone
Antiparietal cells antibodies test
Intrinsic Factor Blocking Antibody, Serum
Urine Methylmalonic Acid
I wanted to check my fasting insulin again because the doctor in Michigan checked it and it was kind of high. CMP is good to check my electrolytes and other random things. I haven't had a CBC checked for at least a year, so this is long overdue. I don't expect to see anything out of the ordinary but it is important to spot check.
Ferritin and Vitamin D are both going to be awful. The doctor threw those ones in on his own. I expect my ferritin to be around 20 and my vitamin D to be about the same. Not good, but I hate taking those as it makes me feel toxic.
Total Testosterone and Free Testosterone was something that I added in. Since I'm taking DHEA, I wanted to make sure it's not too much. I don't think it is but I think it is important to verify this with labs to be safe.
The last 3 tests are all for B12 deficiency and pernicious anemia. I wanted to finally put this PA idea to rest. Most who have PA will have either one of those antibodies, so we will see. I also got the urine MMA checked to see if this correlates with the MMA test that Genova Diagnostics did in the NutrEval test.
I don't know if I'll get the results to these before we see him, but I might email the office manager and ask her to send them so I can look them over before we come in. This way I can have any questions ready. :)
Saturday, November 6, 2010
Just a Reminder
I just wanted to remind people that the information on my blog are the personal experiences I've had dealing with my health issues. I also discuss things I've done to try to overcome them. This is not meant to be medical advice. Even if we have similar symptoms, you need to discuss everything with a doctor. Adrenal insufficiency is a serious condition that needs to be followed by a professional. I'm just some geeky blog writer that likes to complain A LOT.
Any information you gather from this blog should be taken to your doctors to discuss. I have a doctor that I work with and so should you!
-Birdlady
Any information you gather from this blog should be taken to your doctors to discuss. I have a doctor that I work with and so should you!
-Birdlady
Thursday, November 4, 2010
I'm still here
Just wanted to check in and say that I'm doing well. The weather has cooled down so I'm just enjoying life at the moment. I've been working a lot, like 16 hours day for my husband and his business. Things are good though! Sure I feel my heart rates are up, but with it being cooler I'm like 75% better. I don't have the shortness of breath or the "I feel like I'm dying" feeling.
I always forget that fall/winter I am actually somewhat normal feeling. :)
Here's a quick update on what I've been doing though. I started following the McComb's Diet plan about 3-4 weeks ago which is supposed to be for candida. You are probably think...OMG has Birdlady lost her mind!? Yes I am doing a candida diet even though I've made fun of them before haha. You can read about the diet at the doctor's own website, which is much different than most "candida" diets. I realize that I was mostly following the plan any way but had to cut out a few more things (all sugar, all dairy, all nuts).
At first, I really didn't want to do it because I knew I'd have to be on my feet more to cook every meal. You also have to get rid of butter which I've never done before. It's really hard to eat some foods without butter like squash, potatoes, rice etc. In addition to this diet, I've also stopped supping with salt. I lost 4 pounds in a week. I'm so sick of POTS patients being told to use salt like it's even doing a damn thing for us? DUMB!
In addition to the diet, I am also taking THorne Research Formula SF722 which is 10-Undecenoic Acid. I take 5 Gelcaps 3 times a day away from food. I have no idea if it's doing anything, but I'm just going to stick with it.
Overall I've lost 7 pounds now. I am absolutely LOVING it! I am finally back in the 120's which I haven't seen for a long time now. Now if I could get my heart to chill out when I try to do leg exercises, I'd be soo happy.../sigh I still cannot exercise and I have to keep myself cool at all times. If I am going out to a store, I wear tank tops underneath my coat so I can cool down fast if I start to overheat. So far this has been working really well. Some days I just wear shorts around the house to stay as cold as possible.
This post is all over the place, but I just wanted to let everyone know I'm doing well!
I always forget that fall/winter I am actually somewhat normal feeling. :)
Here's a quick update on what I've been doing though. I started following the McComb's Diet plan about 3-4 weeks ago which is supposed to be for candida. You are probably think...OMG has Birdlady lost her mind!? Yes I am doing a candida diet even though I've made fun of them before haha. You can read about the diet at the doctor's own website, which is much different than most "candida" diets. I realize that I was mostly following the plan any way but had to cut out a few more things (all sugar, all dairy, all nuts).
At first, I really didn't want to do it because I knew I'd have to be on my feet more to cook every meal. You also have to get rid of butter which I've never done before. It's really hard to eat some foods without butter like squash, potatoes, rice etc. In addition to this diet, I've also stopped supping with salt. I lost 4 pounds in a week. I'm so sick of POTS patients being told to use salt like it's even doing a damn thing for us? DUMB!
In addition to the diet, I am also taking THorne Research Formula SF722 which is 10-Undecenoic Acid. I take 5 Gelcaps 3 times a day away from food. I have no idea if it's doing anything, but I'm just going to stick with it.
Overall I've lost 7 pounds now. I am absolutely LOVING it! I am finally back in the 120's which I haven't seen for a long time now. Now if I could get my heart to chill out when I try to do leg exercises, I'd be soo happy.../sigh I still cannot exercise and I have to keep myself cool at all times. If I am going out to a store, I wear tank tops underneath my coat so I can cool down fast if I start to overheat. So far this has been working really well. Some days I just wear shorts around the house to stay as cold as possible.
This post is all over the place, but I just wanted to let everyone know I'm doing well!
Sunday, September 26, 2010
A little rant...
I frequent a lot of different "health" boards where people share their experiences and lab work. Most of these forums have to do with adrenal and thyroid issues and over time I've come to the realization that they are all insane. Yes insane.
There is a growing group of people who are starting to spread these twisted ideas into other forums with nothing to back up what they say. They are giving people such horrific advice I actually want to vomit. Most of the time I seriously HAVE to comment or I fear for this person's well being. I have become the disenchanted voice on a lot of these forums, but for good reason. All of their advice did not work for me, so when I see people regurgitating the same bull shit over and over again it makes me very angry. The very people giving advice are sick. Can someone explain to me how that even makes sense? Why would you ask advice from someone who isn't feeling better and is posting their own questions to the group?
I know that these groups mean well, but I think they need to be more careful on what is being said. There is a fine line between "giving your own personal experience" and down right telling people that their labs are wrong (even when they are within normal range) and saying they need to take potassium, sea salt and whatever else they decide your labs show.
Let me try to come up with some examples here. These labs are all made up numbers off the top of my head, but the concept behind it are real life stories.
Person #1 Doesn't have many symptoms of hypothyroidism, but wanted to see their levels.
TSH 1.5
FT3 3.6 (2.4-4.2)
FT4 1.4
They are told they could use thyroid because FT3 used to go up to 6. I have no idea where people come up with this stuff, but it's ridiculous. I think these are damn near perfect thyroid labs! I do agree that lab ranges are very inclusive, but if someone feels ok where they are don't tell them they need to be a certain arbitrary number to feel better.
Person #2 Male, complains about being depressed, anxiety and has POTS. I always take special interest in cases where someone states they have POTS. Typically they don't like to hear what I have to say though because everyone at these forums and groups have told them that HC is the magic bullet (when it really isn't in most cases).
Here's the general idea of labs.
ACTH Mid range of lab
Cortisol AM Top of range (but I know that this can be artificially high)
Aldosterone Low (We don't know if they salt fasted, so I throw this out)
Testosterone Very low
Vitamin D Very Low
Calcium Top of range
Saliva cortisol results High in morning, Drops off at noon then perfect the rest of day.
One group said this guy needed HC immediately and his aldosterone was awful. Since we don't know if he salt fasted, you can't make that assumption on the aldosterone. As for his cortisol levels, I have no idea why someone would think HC could even begin to help this person. There are no indications that he needs it at all. Not even close.
Then he is told to IMMEDIATELY get on vitamin D. Well dumb asses if you knew what the hell you were talking about, you'd know that this man needs to get his parathyroid hormone checked before doing that. Having a high calcium (anything above 10.0) with an extremely low vitamin D is TEXTBOOK presentation of hyperparathyroidism. Oh but these groups are so hell bent that everything is either thyroid or adrenal, they miss the obvious.
That's all the examples I feel like giving, but there's so many. I'm so sick of these adrenal people telling everyone that POTS is cured by florinef and HC. You are WRONG. Maybe there is a small percentage of people who have Addison's and this is true, but POTS is much more complex.
Not everything is adrenal and thyroid. There are other conditions and body parts ya know....And we don't know everything. If you think you know everything then you are in for a rude awakening. I learn something new every day. My thoughts on just about everything when I started this blog a few years ago has changed 180 degrees.
I think going on HC and thyroid for everything is the wrong direction. EVERYONE is told their levels are too low or not "optimal". I haven't seen a single person told they were OK...
There is a growing group of people who are starting to spread these twisted ideas into other forums with nothing to back up what they say. They are giving people such horrific advice I actually want to vomit. Most of the time I seriously HAVE to comment or I fear for this person's well being. I have become the disenchanted voice on a lot of these forums, but for good reason. All of their advice did not work for me, so when I see people regurgitating the same bull shit over and over again it makes me very angry. The very people giving advice are sick. Can someone explain to me how that even makes sense? Why would you ask advice from someone who isn't feeling better and is posting their own questions to the group?
I know that these groups mean well, but I think they need to be more careful on what is being said. There is a fine line between "giving your own personal experience" and down right telling people that their labs are wrong (even when they are within normal range) and saying they need to take potassium, sea salt and whatever else they decide your labs show.
Let me try to come up with some examples here. These labs are all made up numbers off the top of my head, but the concept behind it are real life stories.
Person #1 Doesn't have many symptoms of hypothyroidism, but wanted to see their levels.
TSH 1.5
FT3 3.6 (2.4-4.2)
FT4 1.4
They are told they could use thyroid because FT3 used to go up to 6. I have no idea where people come up with this stuff, but it's ridiculous. I think these are damn near perfect thyroid labs! I do agree that lab ranges are very inclusive, but if someone feels ok where they are don't tell them they need to be a certain arbitrary number to feel better.
Person #2 Male, complains about being depressed, anxiety and has POTS. I always take special interest in cases where someone states they have POTS. Typically they don't like to hear what I have to say though because everyone at these forums and groups have told them that HC is the magic bullet (when it really isn't in most cases).
Here's the general idea of labs.
ACTH Mid range of lab
Cortisol AM Top of range (but I know that this can be artificially high)
Aldosterone Low (We don't know if they salt fasted, so I throw this out)
Testosterone Very low
Vitamin D Very Low
Calcium Top of range
Saliva cortisol results High in morning, Drops off at noon then perfect the rest of day.
One group said this guy needed HC immediately and his aldosterone was awful. Since we don't know if he salt fasted, you can't make that assumption on the aldosterone. As for his cortisol levels, I have no idea why someone would think HC could even begin to help this person. There are no indications that he needs it at all. Not even close.
Then he is told to IMMEDIATELY get on vitamin D. Well dumb asses if you knew what the hell you were talking about, you'd know that this man needs to get his parathyroid hormone checked before doing that. Having a high calcium (anything above 10.0) with an extremely low vitamin D is TEXTBOOK presentation of hyperparathyroidism. Oh but these groups are so hell bent that everything is either thyroid or adrenal, they miss the obvious.
That's all the examples I feel like giving, but there's so many. I'm so sick of these adrenal people telling everyone that POTS is cured by florinef and HC. You are WRONG. Maybe there is a small percentage of people who have Addison's and this is true, but POTS is much more complex.
Not everything is adrenal and thyroid. There are other conditions and body parts ya know....And we don't know everything. If you think you know everything then you are in for a rude awakening. I learn something new every day. My thoughts on just about everything when I started this blog a few years ago has changed 180 degrees.
I think going on HC and thyroid for everything is the wrong direction. EVERYONE is told their levels are too low or not "optimal". I haven't seen a single person told they were OK...
Tuesday, September 14, 2010
I've Given Up
Well today I'm raising my HC dose again. My skin is tanning around my eyes, so that's enough for me. It looks like I got punched in the face. I guess it's HC for life at this point.
Monday, September 13, 2010
Ugh HC Weaning Isn't Going Well
It's been another 10 days or so and my body cannot adjust to this lower dose of HC. Even my husband is seeing it. He's now remembering all of these weird symptoms I had that disappeared on HC. Now they are coming back and we aren't forgetting any longer.
The past few weeks I've constantly had that "I'm just feeling weird" feeling. The ringing in my ears is getting worse. I have moments of complete hearing loss in my ears for a few minutes at a time. I've been feeling sick to my stomach, almost flu-like without actually vomiting though and I've been having crazy hot flashes and chills. I'm way more thirsty and my pee is clear. This is all from lowering my HC dose, which makes no sense to me. I am getting up in the middle of the night to pee too.
Yesterday and the day before I had to take more HC. I was sort of afraid that if I didn't I'd start going down the adrenal crisis path. Ugh. I just hate to admit defeat on this because I really don't want to have to take HC for the rest of my life. It's pretty frustrating.
The past few weeks I've constantly had that "I'm just feeling weird" feeling. The ringing in my ears is getting worse. I have moments of complete hearing loss in my ears for a few minutes at a time. I've been feeling sick to my stomach, almost flu-like without actually vomiting though and I've been having crazy hot flashes and chills. I'm way more thirsty and my pee is clear. This is all from lowering my HC dose, which makes no sense to me. I am getting up in the middle of the night to pee too.
Yesterday and the day before I had to take more HC. I was sort of afraid that if I didn't I'd start going down the adrenal crisis path. Ugh. I just hate to admit defeat on this because I really don't want to have to take HC for the rest of my life. It's pretty frustrating.
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