Monday, July 14, 2008

The Journey to Finding Answers

It's been a long time since I posted on this blog. I have learned so much more information since August '07. I wanted to add the new revelations here in case someone finds this blog in the future.

Here is my long journey:
I started to go to a doctor by the name of Dr. David Goldstein located in Wexford, PA. This is his website for those interested. He is a very good doctor and will tell you to lose weight or change your diet in order to get better. I really appreciate doctors who are bold enough to say this to people. There aren't many out there that will do this.

His receptionists could be a whole hell of a lot nicer, but he makes up for them. haha

It took several visits to really start figuring out what was going on. I admit that I got really frustrated during this "finding out" period. He ordered a crap-ton of blood tests, so he could see what was going on with me considering I am so young. I think I might be one of his youngest patient, but I can't be completely sure about that.

He agreed with me that it looked like I had adrenal fatigue. I went ahead and started a very low dose of Cortef. For those of you who don't know what Cortef is, it is a synthetic form of hydrocortisone. This really didn't help me at all. I had one of the worst days of my life while on the medication and immediately stopped taking it. I literally could not stand up for an entire day. I was so fatigue and lightheaded with "white vision".

About a month after taking the Cortef and many supplements, I begin to get a lot of pimples. This really puzzled me because you can ask anyone I went to school with or worked with, I had perfect skin. I truly mean perfect skin. Doctors, friends, random people would tell me how amazing my skin was, so when I started getting pimples I knew something was totally off.

Then my hair started to fall out. When most people think of hair loss, they think of a few hairs in the brush. Nope, I had large chunks of hair falling out. The hair loss literally started OVER NIGHT. My hair was fine and then the next day, I had a coin size chunk of hair missing just above the left ear. Being a woman I am very self-conscious about my appearance and I felt like everything was falling apart all at once.

Here is a picture from December when it first started to fall out.
Here is a picture from a few days ago. You can see a huge difference. The increase in acne too.

Then my left leg went numb from my knee all the way up to my hip. It was the scariest feeling ever. I could not shave that part of my leg because it was painful, but at the same time numb.

Then I begin to get severe bladder pain. Oh my goodness it was terrible. I soaked in the bathtub for hours when these came on. (This part is very important in just a moment).

I called the doctor and told him I was completely eliminating the supplements and cortef because of all the symptoms I started to have. He was completely dumbfounded. I did start back on the supplements a week later.

I went in for my next appointment and showed him my hair. He didn't even know what to say, which at least he told me that. Once again, I appreciate a doctor who can tell me when he has absolutely no idea what is wrong. There are too many doctors out there who will simply give you a pill just to shut you up. He agreed that it was definitely an autoimmune response and he said it might be a good idea to see a dermatologist, but that it was completely up to me. He diagnosed the leg numbness as paresthesia. I had already looked into this before I went to the office, so wasn't too surprised when he said this to me. My sister had this condition too, but it was caused by her brain tumor...naturally I was scared to death.

We both decided that something else was the problem and completely abandoned the idea of adrenal fatigue. This is about the time when I shut down the blog. I figured there was no reason to update something I no longer thought I had.

I begin to get Vitamin b-12 shots in the hip every week for a month. This "cured" my leg numbness. The pills and patches would do absolutely nothing for me. The shots were the only thing that did the trick. However the leg numbness comes and goes. I get a shot anytime I begin to feel tingling in my fingers or legs, which always goes away in a day or two.

A few visits later he begins to ask me about my thirst. Whether or not I was thirsty a lot or if I had to use the restroom frequently. Remember my main symptoms were fatigue, dizziness, lightheadedness and heart palpitations. All of these could be dehydration symptoms! I sat in his office and really had to think about this one. As he asked me this, I realized that I am constantly thirsty. As I was talking to him, I wanted a drink of water so darn bad. As I type this, I am looking for some water. He ordered even more blood work, but this time specific hormones and a whole urinalysis with culture. I also had to restrict all water intake for 12 hours. I thought to myself...huh 12 hours. That's easy. NOPE! lol

In the time before I got the blood work done, I begin to do research on hair loss. There are a lot of things that can cause diffuse hair loss, but alopecia type is very specific. Most websites just say "autoimmune response", but I don't buy the load of bull that your body begins to attack itself for NO reason. This is not normal. Something has happened to cause your body to begin to do this. My husband's searches began to lead back to heavy metals. Lead and mercury being at the top of the list. I knew that I had mercury exposure because I was vaccinated as a child and I have a lot of amalgam fillings in my mouth currently and as a child. My teeth have always been really really bad.

So I went to a natural pharmacist in Wildwood, PA by the name of Dr. Dan Wagner. His website can be found here. I had him cut some of my hair and he ordered a full hair analysis. Hair analysis aren't always that accurate especially with mercury. They will only show high levels of organic-mercury, which is found in fish. These won't show inorganic or elemental mercury from amalgam fillings or mercury vapor exposure.

When the results of the hair analysis came back even I was a little shocked. The test showed that I had elevated levels of lead in my hair. Lead? I thought to myself, where the heck did I pick up lead from? My husband and I knew there had to be lead somewhere in the house. After testing all of our dishes, cups, mugs and everything else we could think of, we tested the bathtub. There it was, the bathtub I used to lay in for hours at a time when I was in pain was leaching high amounts of lead into my body. It was quite surreal seeing the test kit turn bright pink on your own So we took care of that as fast as possible. I didn't bath for 2 days because I didn't want anymore exposure. haha

Back to the blood work...
The 12 hours of water deprivation were pretty hellish. My heart was racing and I was very dizzy and faint. I found out that I did have a terrible UTI which was causing me the bladder pain. The antiduretic hormone came back very low and my urine's specific gravity, Goldstein felt was too low for how high my blood volume was. So this when I was diagnosed with Diabetes Insipidus.

I am now on a nasal spray, desmopressin, which has made my life so much better. This summer I have been able to plant flowers, work in the yard and take walks at the park! The story does not end here though. Why do I have Diabetes Insipidus? See most people get the diagnosis from a doctor, fill their prescription each month and never think about the why. Not me. That is what my whole life revolves around. Finding out the why.

Goldstein and I both think it is heavy metals. He wants to get me off of this medication because it should not be necessary. I had an MRI done and there is no damage to the pituitary gland, no tumors. If the gland is there with no damage or tumors then it should be working. Goldstein offers a DMPS urine challenge test.

Since writing this, I no longer recommend having a challenge test preformed. They are far too dangerous and have been known to cause permanent damage in certain people.
See this website for more information

You are injected slowly with DMPS which is a provocative agent. It pulls the heavy metals out of your body and you are then required to collect urine for 6 hours. The urine is sent to a lab to be analyzed for heavy metal content. I was REALLY scared getting this injected in me because there are a lot of horrible stories online. I can honestly say that I had no ill effects from this injection, but I also eat very well and have been taking Vitamin C, Chlorella and Cilantro since. Since writing this, I no longer recommend taking Chlorella or Cilantro with amalgams present in the mouth.

My results were incredible. The amount of mercury in the urine was 29.68mc/g creatinine. Looking online, the FDA says anything above 25 could mean you are showing symptoms of mercury poisoning. The FDA is full of shit too, so I know this is an unbelievable amount. They still say vaccines are safe, so I take their info with a grain of salt. As a tidbit of information, a single flu-shot has 25ug/g of mercury in it...

This journey has lead me to believe that I have mercury poisoning from years of vaccinations and dental amalgams. I am no different than anyone else in this country and I suspect there are MANY others out there with weird symptoms and illnesses that could be linked back to heavy metals. Currently I am in the process of getting my amalgams out and I am taking EDTA. My hair has not begun to grow back yet, but it's only been a week. It will likely take months before I start to see results. I hope this blog entry inspires people to begin asking why and to do their own research into their health. It's been an incredible journey for me and I know in 6 more months I will have gained twice as much knowledge as I did in the past 6 months.


Meg said...

hi. i have been taking 250 mg dmsa via suppository. had 8 fillings taken out this summer. feel the worse i ever have and was feeling pretty damn bad to begin with. can you tell me what kind of oral dmsa i should try and where to order?

Birdlady said...

You must be feeling absolutely terrible. 250mg of DMSA would likely put me in the emergency room. I would immediately discontinue using the suppository.

I recommend following Dr. Cutler's protocol with dosing. You should join the frequent dose chelation yahoo group and read the files section to get a better understanding. I also recommend buying Dr. Andy Cutler's book, Amalgam Illness: Diagnosis and Treatment. It will save you from hurting yourself further.

There are 2 places online you can purchase DMSA. You'll have to copy and paste the links into your browser.

The first website is here.
This is run by someone who posts regularly on the frequent dose chelation yahoo group (Dean). He will make any dose of DMSA you want. I recommend starting VERY low like 15mg or even less. For some people 15mg is still too high depending upon their toxicity.

The second website is here.
These are only available in the 25mg dosage. That will be too much for you to start off with most likely. However since it is very cheap, you could split the capsules in half.

The other option is to have compounding pharmacist make something for you. You may need a prescription for this. However I am not completely sure how that works for DMSA. Since you can get DMSA without a prescription, it must depend on the pharmacist.

Just remember that chelating mercury is a marathon rather than a sprint. It will take a long time to get better and it will take longer if you try to cut corners. If you need anything else, please feel free to comment anytime.

Elizabeth said...

I just looked over your symptoms...I hate the tinnitus - I have such trouble sleeping too (waking up after only a few hours and I have a terrible time falling back to sleep) so I wear earplugs so nothing else will wake me and the ringing is worse.

Just wondering...have you noticed any worsening of the tinnitus during detoxing? I have and I'm hoping I just need more rounds for this to improve.

Andy Cutler does say that endocrine problems take a long time (like our sleep and sex drive). I just wish of all things that I can have normal sleep again. I just can't function as I'd like to.

Birdlady said...

Sorry for not responding sooner. I got your message while I had a flu and completely forgot to comment.

Yes my tinnitus has changed during chelation. Some days I swear it is better, but then the next day it is back to the annoying high pitched "EEEEEEEEE". I've been meaning to find what pitch that is, so people could hit that note on their piano/keyboard to see what it is like to hear it all the time! It's fairly high.

I agree that endocrine problems will likely take the longest to recover from. Probably because it is from a damaged pituitary or weakened adrenals/thyroid.

Insomnia can be from so many different things including low blood sugar, low aldosterone, electrolyte imbalance, high and low cortisol, stress (obviously) etc. It would take a lot of investigation to find out exactly where your problem lies. That is what I am in the middle of at the moment.

I've taken a pretty hefty vacation from chelation just to see what is wrong with my body. With the sudden collapse of my TSH, I knew that something very serious is wrong with me. It is not normal to have NON DETECTABLE TSH without being on thyroid medication. At first, part of me loved the idea of blaming EVERYTHING on mercury. It was so easy. But now, I am a little scared of doing this in case I miss something extremely important.

Feel free to comment anytime you like.

david said...

You said that your heart races when standing. I have that as well. I have noticed my hair falls out only when standing. Have you checked your hair by running your hands through it and colletcting the hair several times per day to pick up on a pattern? I did this thoughout the day and noticed that my loss occurred when standing for long periods. I also have tinnitus. I believe it has to do with circulation.

Birdlady said...

Hi David,

My heart rate increasing upon standing and tinnitus was due to low aldosterone.

Here's a great site that explains
it perfectly.

Now that I am taking florinef I no
longer have those symptoms! Woohoo!

Hair loss can be from a lot of
different things, but diffuse hair loss like you are describing is likely from hypothyroid. Even if your doctor says everything's "Okay", they probably aren't checking the right labs and are only looking to see if the numbers are within the range. Within range does not mean optimal, so you'll need to find a doctor who understands this and will treat you accordingly to how you FEEL rather than what your labs say.

Next time you get blood work done, ask them what they are checking. If they are only checking TSH, then you need to fire your doctor and find a new one. TSH is a pituitary hormone, not a thyroid hormone.

rregge said...

Please relook at the pituitary gland. MRIs without contrast seldom pick up pituitary tumors (even then small ones are hard to find). It takes a very special doc to find and treat these. Check out there are alot of people there with similar problems. Get to the best teaching hospital and look for a nuro endocrinologist (mine are at Mass General)
I had a pit tumor and had many of the symptoms you discribe. That combined with a positive test for diabiates insipidus sceams pituitary problems.

Please look at this. These tumors are more common than you think, and the fix is easy.

Good luck


H said...

I have been reading about Mercury Toxicity and amalgam related illnesses. If you have a chance, check out Salem Dental Studio

This dentist knows a great deal about effects on metal fillings. Hope this helps.