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 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.

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. :)

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

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!

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...

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.

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.

Weaning Down HC: How it's Going

I can never remember what I even put on my blog these days. haha Well after a lot of pondering, I have decided to start weaning off the hydrocortisone. Yep...It's going to be bad. I know.

I've been dosing 15mg of HC at 7.5, 5, 2.5 for probably about 2-3 weeks now. It's odd because now I am noticing symptoms. I am feeling dehydrated for the first time in a year. Every once in a while if I am busy doing something I forget to drink, but I almost always have a drink of some type in my hand. I particularly like orange juice with a sprinkle of salt in it.

Well for the past 2-3 nights, I've been needing my water bottle next to the bed. Bad sign. I am also having night sweats and my fingers are swelling up like a balloon at night. I've noticed my face is looking puffier too. Last night at Wal-mart I was totally regretting not having a drink in the car with me. I used to be like that a long time ago...

Typically puffiness most would associate with over replacement. I can assure you that 15mg is no where near over replacement. I am struggling with nausea on a daily basis on this dose, but I am trying to see if I can even go any low. If I can't go any lower, then I think I can confirm true adrenal insufficiency rather than just fatigue.

I'm rather shocked at the weird symptoms I am getting. I never thought the thirstiness was fixed with the HC!

I'm giving this dose another 2-3 weeks and then I'll be going down to 12.5mg.

Got Labs: More Nothing

Considering how sick I am, I am always amazed at how nice things look on paper...lol

Creatine Kinase 55 (33-194)
Lactate 0.57 (.50-2.20)
Pyruvate 0.89 (0.30-1.50)
Copper 87 (70-175)
Ceruloplasmin 25.1 (18-53)

Wrist pain is fading

Just wanted to let everyone know the wrist pain is way way better. I don't need the stupid bandage anymore!

My "Go-to" for Ovarian, Uterine Pain

I'm not sure I ever documented this before on my blog. I think these health problems were LONG before I ever started blogging and it was so long ago that I just never really thought about it. I really have come a long way in my health journey.

This isn't the first time I've had uterine pain. I also have it about 5-6 years ago. Right around this time is when my trust in doctors started to rapidly fade away. I was having A LOT of uterine pain during intercourse and it was really causing me a lot of emotional distress. I sucked it up and finally decided to see a doctor about it. It's sort of an embarrassing problem to have, so I didn't want to tell anyone about it especially at age 20-21!

I went to see this gynecologist who was supposed to be "one of the best" in the area and after examining me, he decided that there was indeed something wrong and he wanted to do exploratory surgery to see if he could find anything. He wanted my permission to remove any endometriosis he saw during the surgery. Well I told him I would have to think about it. I don't take surgery of any type lightly. He also suggested, if I didn't want to do that, then I could be placed into early menopause at the lovely age of 21!! WOW I told him that wasn't even an option!! I knew nothing back then about the medical system and was completely dumbfounded that a doctor would even suggest this for someone my age who was newly married last year... I opted for the ultrasound which ultimately showed nothing, but I knew I wasn't crazy.

This is really when my search for alternative treatments started. The lack of answers from this doctor sent me down the "rabbit hole" as they say. After looking up the symptoms of uterine fibroids, I decided this was probably what was wrong. My husband found a supplement that was supposed to dissolve fibroid tumors and we ordered it. I figured I had nothing to lose right?

Within the first few days of taking it, I noticed pain in some of my joints and in areas where I suffered injuries years prior. When I was ~10 years old, I stepped on a toothpick which went straight into the heel of my foot. That exact foot and heel was hurting terrible while taking these supplements! I could not walk on it at all for an entire week. I thought it was really weird and didn't put 2 and 2 together until a few days went by. It turns out this supplement eats away fibrin from current or past injuries. I knew that it must be working, so I continued taking it.

Things started to get better. The uterine pain was lessening and lessening and lessening. Then after some time I realized I just wasn't having the pain any more at all!..This didn't happen overnight, but it also didn't take like 3 years either. I believe I finished off two 450 capsule bottles and then decided to stop taking them to see what would happen. Well nothing bad happened. The pain was gone and stayed away for a long time.

Well since the pain appears to be bad again, I figured I better get back on the supplement to see what happens. Thankfully we had an old bottle in the refrigerator! I took 5 pills right before bed and woke up with some wrist pain. I thought to myself, wow this is really odd. What the heck did I do to myself while I was sleeping? At first I thought I had slept on it weird. I took my next dose that morning, once again not thinking about the supplement. We were out at the store when it just hit me like a ton of bricks. OMG it's the pills making my wrist hurt!

Once again, just like the last time, the Vitalzym is making my joints hurt for some reason. It's obviously dissolving fibrin or some type of scar tissue. Not only is wrist hurting really really bad--I have it wrapped up in a bandage--but my left ankle bone started to hurt tonight too. haha You have no idea how incredibly painful writing this post has been and it makes me wonder if it's healing damage I've done from working on the computer all of these years.

I guess there's a new reformulated Vitalzym that's supposed to be even more potent. I still have the old stuff. If I can find the funds to buy the new stuff once this bottle runs out, I'll let you know how it works. I guess you don't have to take as many pills to get the same strength which is great. Right now I'm taking 15 pills a day, which can be hard to get down. If you are interested in Vitalzym just do a google search. Lots of online stores sell it, but I recommend doing some price checking! Some websites are WAY cheaper than others.

I'm curious to see how this works and I'll keep updating.

The PVC's are gone finally

Yesterday I noticed a drastic improvement in my heart rhythm and today it is about the same. I had about 5 or 6 PVC's compared to 1 every single minute or more! I don't know if it's because I stopped the B vitamins or if I added in some extra potassium and magnesium. I'm sure those didn't hurt at all, but I really think it was discontinuing the B's that did it. Now this time, I'm starting each B vitamin on their own and giving it a week to see what happens. That way I know RIGHT AWAY which vitamin(s) is causing the problems.

I might need to go to the gynecologist. Not to be too gross, but I was having a lot of mid-cycle pain this month which I haven't had for a while. I also noticed that my ovulation discharge was a weird orangy-red color which I've NEVER seen before. Now when I urinate or move a certain way I am getting ovary pain and making love to my husband was so painful I nearly threw up! Sorry if this is TMI, but I think it's important to document this. I've NEVER experienced pain like this before. I stood up and nearly collapsed. The nausea was soo bad, I had to just lay down for a while until it all passed. My abdomen is feeling kind of odd right now too...

I have no idea what is happening here. I always feel like something new is showing up.

I hate doctors

The PVC's are just not going away, so after a long internal debate I decided I should go to the local urgent care to make sure everything is ok. I just wanted to make sure that the rest of my heart rhythm was normal. I've been getting the PVC's just about every minute, which if you look online isn't THAT bad. But still, it is pretty darn uncomfortable especially when this is happening with HR's into the 140's!!

I get into the exam room and the nurse says they usually just send heart palpitation patients to the ER as they can't really do much here. "I'm not a doctor though, just telling you what normally ends up happening". I was thinking to myself. Well I didn't go to the ER because it's not to that point.

They do an EKG and of course it's always lying down and when you aren't symptomatic. I hate that. The EKG comes back completely normal which was great, but it didn't capture what I was experiencing. Literally 5 seconds after she printed that stupid sheet out I had like 2 or 3 PVC's upon sitting up! /sigh

The doctor comes in and he is insulting and patronizing me immediately. I'm thinking to myself, what did I do to deserve this type of treatment? I come in here because I wanted to make sure I wasn't in SVT or something and this guy is just lecturing me about stupid shit that doesn't even matter to me.

He tells me that I need to start working again because it's clear that I need more structure in my life and I need to be "part of a team". He said that when you don't work, your heart doesn't have anything to respond to so it starts to race at times when it shouldn't. If I had a job that would be the best thing for me. Can I say WTF? I just let him continue because I wanted to make sure he dug himself the largest hole possible with no way out. He keeps telling me that I need to find out what my triggers are for this "POTS" and I need to stop doing it.

"How long have you had POTS". Diagnosed 1-2 years, but I've had it for about 10 years. "Well you need to stop thinking about it and just live. You are worrying too much about this POTS and need to work. This is when I stop him and correct him about what POTS even is because he kept using the wrong words. He was saying Paroxysmal tachycardia or something like that and I told him NO it is called POSTURAL orthostatic tachycardia syndrome. Then I went on to tell him that I used to work. Quite a lot actually and I eventually had to quit because I COULD NOT WORK ANYMORE due to my heart. "Well you need to find a job that you can handle because that's the best thing for you." WOW WOW WOW. I was so mad at this point, I picked up my purse and said, well there is nothing you can do for me, so this is over.

He stopped me. That's when he realized that I wasn't a freakin' idiot and said, "I know that what you feel is real. I'm not saying that your HR's aren't high or that you aren't having PVC's, you just need to realize that this will never go away and you need to live with it. I told him, what the hell did he think I've been doing for the past 1o years. I've been DEALING with it.

That's when I brought out the big guns because you have to think like a doctor. I said that I had been to Cleveland Clinic and they diagnosed me with this and they believe it's a dysfunction of the autonomic system and has nothing to do with the fact that I'm not working. That's when he started telling me about his lovely daughter. She's such an amazing basketball player. Very very fast runner and can do so much stuff. Thanks asshole for reminding me how much shit I can't do on a daily basis. He said that she has nervous system problems too, but she learns to deal with it by playing basketball. That's her way of channeling it. WTF? I asked him if he's ever had a 140 HR just from standing up from a chair. He gets a bit quiet and tells me that he had a fast HR a few times and it can be scary. That's when I pushed even further and said, what if it happened EVERY TIME YOU STAND!!! He had nothing to say about that.

He asked me what Cleveland Clinic was doing about "POTS". Oh to interject, he was talking about POTS like it was herpes or something. HAHA Just weird. Anyway, I told him that they wanted me to increase my florinef dosage and salt intake. The look on his face was "I have no idea what this girl is talking about, but I'm going to pretend like I do". He said, oh how has that worked for you. I told him that I had already tried that last year and it does nothing for me at all. The only thing that worked was a beta blocker, but as the weather got warm it stopped working because of my severe heat intolerance. To further prove that he had no idea what he was talking about, he said that "Every 5 years or so, car companies come out with new model cars. There are new computers available too. Maybe next year they will come out with a new beta blocker that won't give you heat intolerance." ROFLMAO!! This guy thinks the beta blocker gave me heat intolerance. haha Then I told him about my elevated catecholamine levels upon standing and that has a lot to do with my rapid heart rates. Once again, he had no idea what I was talking about. I totally out-doctored him right there, but this was all on purpose.

Towards the end I was shifting a lot on the exam table, looking at my purse, floor, purse, floor. He said, well I'm very sorry I can't give you a pill here today. I immediately interrupted him and said that's not what I wanted!! He seemed confused by this comment and then he got up and left. He told me I should contact one the hospitals in the area because they have a very prestigious cardiologist/EP department. I told him that I had already...I see the head of the freakin' EP department of that hospital! I also explained to him that I had a tilt-table test. "Oh you had one of those?" I said yeah that's the only way you get diagnosed with POTS and I've had 2. One at the local hospital and Cleveland Clinic. That was basically it. He said to "keep in touch". Why? So I can come back to you to hate myself even more?

What an asshole.

Basically this office visit made me have more PVC's because I was so pissed off by the doctor. I am writing a letter to the corporate office about this. He was the biggest piece of crap I've ever seen since that ER visit like 4-5 years ago who said I was a heroin addict looking for drugs. I believe to this day that was an adrenal crisis...

As Suspected...

As I kind of guessed, I begin taking vitamins and the heart palpitations start. Why? This makes no sense to me at all. It's not like I'm taking weird things. I added P-5-P (B6), biotin and B2. How is any of that weird!! The other supplements I've taken that have given me heart palps includes l-carnitine and CoQ10...Once again, why?

I don't know what to do about it. I'm thinking this time to just fight through it rather than stopping. I know the weird beats aren't threatening as they've been captured on an EKG before.

We'll see how this goes. I think it has something to do with my breathing and sinus arrhythmia. I believe the PVC's are happening as I inhale or after I exhale.

On a completely different topic. I had terrible mid-cycle pain this month. Last night I was in agonizing pain.

Labs Drawn

I had to make an appointment with the nearby hospital to get my labs done. First they had to order in the perchloric acid needed for the one test (pyruvic acid). This is a reagent that Labcorp doesn't even carry since there is a risk of explosion if it's not handled properly. haha This reagent must be chilled before applied to my blood, so it had to be refrigerated at least 2 hours before I came in. Hopefully everything was done right. It's the same hospital that did my NutrEval test and that worked out well. Thankfully my veins cooperated really well. Man I could not believe it! That lady hit my vein and the blood just came pouring out hahaha I filled up all the vials in no time and without a tourniquet (except for the initial puncture).

My sleep schedule has been off lately. I think it's because I feel so awful during the day, so I tend to want to stay up later and later since it's usually cooler at night thus I feel better...

Now I can start taking supplements again to see what happens. Why do I have this feeling that I'm going to feel like hell this week? lol

I'll be sure to post my results of the tests when I get them. I have no idea how long that might be...Most of the labs are done at the hospital from what I was understanding, so it shouldn't be too long.

Woohoo! My hormone doc ordered Mito labs!

My hormone doctor has agreed to order mitochondrial tests for me. The mitchondrial doctor I talked to on the phone a few weeks ago gave me a few tests I could have done to see if this issomething I should pursue further. She did warn me though that even if all of these tests come back normal, it doesn't mean I don't have a problem....haha She just said that if these DO come back high, then we know without any doubt there's an issue. If that is the case, then I'll need to figure out a way to get my butt to Atlanta, GA...One thing at a time...

I just gotta call around and see what hospitals even do them. The one has special handling, so I can't just walk into Labcorp or Quest and get it done.

Pyruvate (Pyruvic acid)
Lactate (Lactic Acid)
Creatinine Phosphokinase (CPK or CK)

Then I added a few of my own to just see what's happening:

Homocysteine
Serum Copper
Ceruloplasmin

I also have to call the insurance company to see if any of these ARE NOT covered...

Still Nothing From Cleveland Clinic

This really is just unbelievable to me.

I called on Thursday and got the secretary. I thought, "oh good" just the person that I've been playing phone tag with. Well sort of. To play tag you need the other person to try calling YOU back, which wasn't happening. I told her that I was trying to be as patient as one can be, but I've been waiting and calling for the past 6 weeks asking WHEN I'd get my report. 5 weeks ago I was told it would be finalized the next day and then sent out probably over the weekend. Now I call and I'm told the same thing each and every week. I want an answer NOW as to when my report will be in my hands...

She looks me up in the system. "oh..um...I guess there must have been some kind of oversight. I don't know why your report wasn't finalized". I told her that I've been told that same thing for the past 4 weeks and nothing has been done about it. "I will have the nurse call you when it is finalized". Okay so when should I expect the report to be in my hands, so that I know when to call and complain again. "I don't know" Well here it is Monday and no report, no phone call. NOTHING. What in the HELL does one have to do to get a damn report from Cleveland Clinic. This is not acceptable.

I hate to burn bridges, but I don't think I ever want to go back there. Just awful.

So...tomorrow I am calling again. I hope I get the secretary, so I can tell her that whatever it is they are doing to get the report finalized ISN'T working. I want my chart put ON TOP of the pile and it stay there until the doctor signs off on it. Period. If this doesn't work, then I'll have to call the cleveland clinic ombudsman to step in for me.

Still Not Doing Well

I was really hoping to see some improvement, but I am really bad...again. I felt decent for like 3 days as far as mood goes. But my heart has just been terrible.

I made myself go to the park today to take a short walk. My heart rate was like 150 as we were walking around, but I just made myself continue on. Suddenly it felt like someone was pushing on my throat and I told my husband I needed to sit down like NOW. We made our way to a picnic table and my HR would not go down even while sitting. I laid down on the table and immediately my heart rate went down to 70. /sigh

I felt completely out of my mind like I was watching myself watch myself.

Cleveland Clinic can kiss my ass. The autonomic department is incompetent and tomorrow they will be getting a very mean call from me. I have had enough of waiting around like a chicken with my head cut off. I want some freakin' answers as to where my report is at. They never bothered to call me back last week and now the bitch has to come out to get anything done. I'm going to tell the woman that I want a DATE that my report will be in my hands. Every single day after that report isn't in my hands, I will be calling them. Every single day until it IS in my hand.

My eye floaters/bright things are all back, so this has to be related to me feeling terrible.

I've Been So Ill Feeling

I don't know what is happening, but I've been SOO ill.


I've been researching non-stop since I got the NutrEval test back. I think I need to further pursue a possible mitochondrial disorder, but just don't have the funds to do it. For now I figured I'd just start on some of the supplements suggested and see how I do.

Well something that I started taking is making me feel terrible! I've never experienced this feeling before. I've had chronic, constant nausea. I feel hungry, but as soon as I start to cook, I can't possibly imagine actually eating the food. I've been making myself eat. My sitting heart rates are way up. I was tachying away at 122 while sitting at my computer chair. OMG!

Yesterday it was beautiful outside, cool with low humidity and I nearly collapsed at the park while taking a gentle stroll. Normally where my HR is like 118, I clocked in at 152, with shortness of breath and felt like hell.

Here's what I started taking:
Fish oil
l-carnitine
P5p (B6)
SAM-e

Today I took nothing, so we'll see how I do. I feel like a piece of shit today. Worthless. What the hell am I even doing here. I can't do anything. My sister wants me to help her buy some trellises from the store and I'll have to tell her I can't do it. What a worthless piece of shit I am. Seriously.

I'm sick of this.