Heavy Metal Chelation Round 5: DMPS Ends

I went a little longer this time, (~6.5 days) but as soon as I noticed a hive, I stopped. I immediately started my "here comes the hives" supplement/medicine regime. I took a benedryl, zyrtec, 3 grams of Vitamin C and 2 grams of Quercetin before bed. I woke up and I was good. No hives and so far I haven't had any more develop. Last night I took more zyrtec, vitamin C, quercetin and half a benedryl. So far so good. I think I have a few mosquito bites though and it is hard to tell the difference between them and hives. haha

The good:
I think I am already seeing improvements on the DMPS. I hate even say this or type this because I don't think I've said these words on my blog, ever?

• My heat intolerance seems a tad better. 5% better
• My heart seems less aggravated at times. 3% better
• My vision is getting clearer again. 

The bad:

• Obviously the hives are bad. Hopefully they stay away.
• I think the DMPS is reacting with a metal post in one of my teeth.

I just keep chugging along here and see what happens. I am off to the dentist to see what they can do about this metal post in my tooth I forgot about it. Of course they are supposed to be "inert", but I'm not so sure about that...

People Are No Longer Open-Minded

Over the past 4 years I have realized that people in the alternative health community are no longer open minded. Each forum has their "go-to" way of doing things and if you question or stray from it, you get yelled at, screamed at, banned or told to go away because you are being disruptive. Well excuse me for asking questions about the treatment or protocol that you sit and defend for hours a day. I thought maybe you had something to back up your claims or perhaps you yourself are feeling better? Oh no you aren't feeling better?....Hmm Well then why would you defend something that has not made YOU feel better? I truly cannot understand it and would like an explanation.

Round 5: DMPS Begins

Well here we go again. I started Round 5 of my DMPS chelation around 11:45AM and will be going for at least 3 days. I may try to do longer rounds, but we will see. I have drastically lowered my dose to 10mg capsules every 8 hours to see if I still break out in hives. So far so good, but on round is never my problem...

No Longer Trying to Come Off HC

This was likely my last experiment. I guess I have adrenal insufficiency of unknown origin and I need to be done with it. Lowering my dose caused major high DHEA symptoms and my emotional well-being started to deteriorate. I finally just went back up to 15mg and am just done with it all. I really wish my doctor had done the appropriate testing to see if I really had a problem because now I cannot come off of it to test. Thanks doc! There is really only 1 thing I can test for while on HC and that is 17OH progesterone. You have to test it first thing in the morning, BEFORE taking your HC for the day. You want to see if this is elevated in the AM because if so, then that's pretty telling the pathway is getting backed up.

Once I went back on the 15mg of HC, not taking DHEA gave me major depression. It took about 3 days for it to appear (probably the amount of time it took for all of that extra DHEA to go down) and I felt like dying.

Now I'm back on 12.5mg DHEA and my normal 15mg of HC. Glad the latest experiment is over with.

Stopping the DHEA For Now

Ever since coming off the Pred, I decided to just keep going with the HC too. If I can get off of this then in a few weeks I can get the appropriate testing done for late onset congenital adrenal hyperplasia (LOCAH) as well as looking into getting a stim test done.

For those who do not know what LOCAH is, basically your body has enzymes which are needed to convert your hormones into cortisol and aldosterone. You can look at this hormone pathway chart on this page to see every step takes an enzyme. 

If you are deficient or missing one of those enzymes, then the step before it gets "backed up" and you are unable to create enough cortisol or aldosterone in the body. Your body starts dumping this extra hormone into DHEA and you grow extra hair on your body. Some have it so severe, the hair growth is very thick, their periods stop and some women (if they have it at a young age) have weird changes to their genitals due to the androgens. If I have this, mine is not severe as I did not have the really thick hair growth, but I am definitely more hairier than most women.  

This testing I should have had done in the beginning. My natural doctor conveniently had no idea what he was doing when he said my 17 OH progesterone was normal even though it was slightly elevated during my follicular stage of my cycle.This should NEVER be elevated and I should have immediately been referred to an endo. A slight elevation means serious issues needs ruled out. There is no way around this and this doctor failed.

Off the Prednisone

Well I am off the prednisone and back on my regular dose of hydrocortisone. I am soo glad. I think I am finally back at my baseline as far as symptoms go. It took a couple days to make sure I was getting enough HC in me from the transition. I tapered much quicker than originally intended because I knew I would just go back to my normal HC dose. It wasn't like I wasn't on steroids in the first place. My adrenals are already suppressed, so the risk of further suppression is not there.

What It's Like to Be On 60mg of Pred... High Cortisol Hell

I think everyone (even some of those crazy hormone replacement doctors) would agree that 60mg of Prednisone is over replacement and is a pharmacological dose. 60mg of Prednisone is the equivalent of about 240mg of HC. I have never been on this much steroid before in my entire life. Add in that 10mg Decadron injection (about 600mg HC equivalent) and I am swimming in cortisol right now. This post is meant for those who are having trouble figuring out their current HC dose. However do not take anything I say as medical advice and before making any changes to your current medicines, be sure to bring it up with your doctor. Dosage changes in those with adrenal insufficiency is serious business and you should not be making changes based upon what someone says on a blog or forum.

Hives Got REAL Bad, REAL Quick

Hives from heavy metal chelation

Author's Edit Jan 2015: This post still gets hits from google, so I wanted to let everyone know who is reading this that I no longer chelate and completely gave up on it all after multiple episodes of dangerous hives.  

Yesterday the hives got really bad. Like I thought my life was in jeopardy because I started to have trouble swallowing and speaking. I went to the urgent care and was given a mega dose of Decadron (Dexamethasone) and told to take high doses of Prednisone for the next 15 days. Part of me was really worried about all of this and the injection, but I had little to no choice. My throat was starting to swell up on me and I was scared to go to sleep like that. Benedryl, zyrtec and some other type of antihistamine had no affect on the hives and I was freaking out.

Hives Are Not Fungal or Yeast

Now that I have been on the Diflucan and the hives have returned again (after stopping DMPS round), I think I can assume it is not from a fungal or yeast overgrowth. Right now they are not too bad, but we will see how the next few days go. I'm thinking longer rounds are the way to go for me since I have no symptoms while on round and the hives only start 2-3 days after I stop. Could it be metals resettling?  I will never really know.

One weird thing I have noticed is in some areas of my body, my skin looks shiny. I have no idea what that is about. Maybe I'll try to take a picture, but I have a feeling it won't show up on my old camera.

Round 4: DMPS Complete

Yesterday I finished up round 4 of DMPS and I feel good. No hives! haha Once I get some more money, I'll get another month's worth filled and just keep going.

My vision is definitely different right now. I think one of my contacts may now be too strong for me. It is odd as I am not seeing the same out of both eyes and at times I think it may be giving me a slight dull headache. I've been wearing my glasses more because I don't tend to notice it as much. My left eye is -5.25 and my right eye is -5.75. I'm thinking the left eye may be too strong and I'll have to dig around to see if I have an old contact somewhere that is -5.00. If I had extra money lying around, I'd go to the eye doctor. I am actually due for a new exam (just got the reminder card in the mail!), but since I don't have the extra money I will just keep wearing these contacts for now.

On my off days I make sure to replenish my nutrients and minerals. The one multi-vitamin that was not giving me heart palpitations has gluten in it. AHH! I cannot win, so I am trying to take individual minerals. Taking all of these pills can get quite annoying at times.

Rant About Hydrocortisone Use in Adrenal Fatigue Patients

Hydrocortisone Use in Adrenal Fatigue: Is it really as good as "they" say?

Today I have decided to rant about using hydrocortisone in those with adrenal fatigue, CFS and any of those non-descriptive syndromes or illnesses.

I have finally had enough of the nonsense and need to speak my mind.

When I started this blog, I was very naive and had no idea what I was getting myself into. When I did research about adrenal fatigue, all of the websites made it seem so easy. Just take some "adrenal support" and you'll be bouncing back like new in no time. Yippee!  I can tell you first hand, they were quite WRONG. Over the years I have realized that these websites paint a very happy, cheerful journey, but in reality it is a long painful journey. They may not willingly know, but they have started a very scary movement of people, telling most to skip going to endos and simply seek a natural doctor who is willing to prescribe HC. Some of them even suggest self-treatment, which is a whole other topic.

Round 4: DMPS Begins

The hives are gone and I decided to start up on the DMPS again. This will be another 3 day round and then after this, I may take a slight break. I will be out of pills and will need to get the money together to order more.

I have had no improvements with the POTS, but my vision is definitely more clear. It is actually freaking me out a bit. In all of my years of life, my vision has never gotten better. Every 6 months I usually have to go back to the eye doctor and get a stronger prescription. About 2 months ago I started to notice my vision was losing its crispness and figured it was only a matter time until I would be heading in again.

Then one day out of no where I realized how amazing the trees and stones looked. I figured I was just going crazy or imaging things, but now it's been a few weeks and it has stayed. The glasses I use around the house are an old prescription. Before I could NOT drive with these on as road signs are blurry and I would not trust myself at all. Yesterday I tagged along to the post office was commenting over and over again how well I was seeing out of the glasses.

We will see if this continues. If my prescription has gone down, I will be speechless--as would my eye doctor.

Hives Have Calmed Down

The hives are better.  The skin is still discolored where they were, but I'm not feeling itchy.  Thank goodness.

I'll probably start chelating again tomorrow.  I just want to give it another day.  I am still taking the Diflucan and will continue to do so.  It will be interesting to see if the hives come back.  Did the Benedryl or the Diflucan help?  I won't really know unless the hives show up again.

Update: Later in the day I had some more hives show up around my neck.  Still keeping an eye on this.

Diflucan: Will It Stop This?

I woke up and immediately called my doctor and the message on his machine scared the hell out of me.  It said he was going to be out of the office for a whole week.  I nearly vomited when I heard this, but decided to leave a message any way.   Thankfully I got a call from one of the receptionists/secretaries and she said she would contact the doctor and get back to me.  I told her she was a lifesaver and was extremely thankful for this because the hives are getting to the point where I might have to see an urgent care soon for high dose predisone. 

Hives on neck-Monday night

I got a call back a few hours later and my doctor agreed to have me try Diflucan.  Since the hives are not responding to zyrtec, he thought it was a very good idea.  I told her (the secretary) that this is my last attempt before I give in and go on prednisone.  The hives are really getting that bad.   This picture above is quite tame compared to the hives on my torso and lower abdomen, which you can see below.   

So itchy!

As soon as I got word it was available at the pharmacy, we ran over there.  I got the prescription and took my first one in the car. haha  Now I wait and see what happens. I don't expect miracles because I may have already reached the point of no return.   I don't want to go on high dose prednisone.  I'm going to be out of my mind if I have to though and that scares me.  I might need to buy a cage for my husband to lock me in...lol J/K!!!  I really do not do well at all on large steroid doses...

Fingers crossed this works.  I am not starting my round today obviously.  I was due to start back up again, but I need to get these hives under control first.

And It Begins...Hives

Tonight out of the blue, with no other symptoms or issues I started to get hives everywhere.  I do not know what to do now.  DMSA and DMPS now both are causing hives?  Here's the weird thing though...I am not on round.  I quit late Thursday night, so it has been 3 days.

Terrible Itchy Hives on Neck and Scalp

Very large, hard hives near elbow

The hives were out of hand, so I took a zyrtec.  I got some nice picture of the hives, so all of you can see what I go through now.  I've got no idea what to do.  The only things you can use to chelate cause me severe distress.  I still find it odd that it took 3 rounds for it to show up.

Well I have to let this all soak in and see what I want to do from here.  To say I am frustrated is a huge understatement.

Update: I woke up Monday morning and the hives are still here.   Wow!  I'm thinking this must be a candida/fungus flare up or some type.  I also have tinea versicolor on my neck now and it is starting on my chest.  You can see a spot of it (if you know what you are looking for) in the picture of my neck.  I'm not sure what to do, but studies I've read suggest taking Diflucan to control the fungus.  We will see what I want to do because I did not really want to do that right now.  Blah...never dull when chelating!

Update 2: It is now Monday night I see no end with these hives.  Zyrtec surprisingly isn't working.  I don't know whether it is because my Zyrtec is 1 year past expiration (haha) or if these hives are just not responding.  Ugh I really did not want to go on an anti-fungal, but I might have to give it a shot to see if it clears up.

Round 3: DMPS Complete

I am happy to say round 3 of DMPS is complete and I don't feel any symptoms still. As a reminder, I am taking 50mg of DMPS every 8 hours for 3 days.  I don't know if I should be happy, worried or content.  haha Is it doing anything?  I should I be feeling something to know it is working?

I am not the type of person who has placebo effects...Today I felt like my vision was more clear like I got a new contact prescription.  It was not particularly bright or sunny, so I don't think it had anything to do with lighting.  We'll see in the next few days if this sticks around of if I am just imagining things.   :)  As we were driving around, I could see every twig and stick on trees.  The rocks on the ground were more defined and it was just amazing overall.  The floaters are still there, but the actual vision felt like it was better than 20/20.  It was incredible.

That is all for now.  I'm still working on getting my thoughts together for Part 2 of the Lyme discussion. 

Lyme Disease Part 1: Another Scapegoat?

Today there are a number of doctors who feel the testing available for Lyme disease is flawed.  These doctors are called LLMD's, which stands for Lyme Literate Medical Doctors.   Many believe that even when standard Lyme lab tests come back negative, that does not rule out the possibility of having Lyme Disease.  There are websites that go into the science and exact reasons why this is the case, but honestly it is over my head.  I'm not even going to try to explain all of that.  If you want to read a more in depth discussion I recommend visiting this page. 

Credit: SteveFE

My problem-because of the inaccuracy of Lyme testing-is these doctors begin to assume everyone has Lyme disease whether or not they have any testing that shows it.  These doctors function on clinical diagnosis especially in cases of Chronic Lyme disease.  My opinion is chronic lyme disease and acute lyme disease are two separate things entirely...  I understand why these doctors feel the need to diagnose someone with Lyme because it gives a patient a label to tell their family and friends.  "Oh I have Lyme Disease".  It's much easier to say instead of a long list of symptoms.  However have we now gone to the other end of the spectrum, with many diagnosed with Lyme Disease who do not have it?  Those who I come into contact with online that have been diagnosed with Lyme Disease seem to have a long list of symptoms or medical issues.  They seem to do very poorly on hormone replacement and often times just never get better no matter what they do.

How does one know Lyme disease is the cause of all these symptoms and in the long term is it safe to simply blame Lyme disease?

There does seem to be a connection between Chronic Lyme Disease and heavy metal poisoning, but that does not make sense if you think about it for a second.  How does a tick bite give you metal poisoning?  Well the short answer is, it doesn't.  My theory is perhaps Lyme disease is a symptom of the overall dysfunction of the immune system.  Perhaps mercury first disrupts the immune system and the body cannot get rid of the Lyme infection.  Once the immune dysfunction starts to worsen, co-infections begin to rear its head and you see people with babesiosis, erlichiosis, bartonella and a long list of other hidden infections like CMV and EBV which are much more common. 

Chronic Lyme Disease is becoming the new Chronic Fatigue Syndrome, candida or fungal infections, Postural orthostatic tachycardia syndrome (POTS), Epstein Barr Virus, Fibromyalgia  or any other viruses or syndromes, in the natural health community.  It is important to keep in mind that all of these are simply a symptom of a larger issue and not the CAUSE of the health problems in most cases. Treating the symptoms of these will not cure you of the underlying issue at hand and even though you may feel a little better at first, the dysregulation will find a way to show up in new areas.  I believe this is why when we fix our bodies in one way, it seems like we turn around and more symptoms begin to appear in other aspects.

I am afraid that Chronic Lyme Disease is becoming the new scapegoat for health issues.  While Acute Lyme Disease is real, I am more concerned about those who go to a doctor and are diagnosed based solely on symptoms.   The treatment is usually long-term, hardcore antibiotics which could have side effects of their own!  We have a real problem today because more and more people are becoming chronically ill with no hope of recovery.  No one knows what is happening and doctors simply do not want to take the time to figure it out.  How can these LLMD be certain that the symptoms suggested on Lyme websites are truly Lyme disease symptoms?

Anyone could walk into a LLMD office and get diagnosed with Lyme Disease. I think it's practically guaranteed...  I had an appointment with a well-known LLMD and I decided against it because I knew I would be placed on antibiotics.  I decided it's better to first deal with the mercury and then go back if this does not work out for me.  That's what I intend to do unless something extraordinary occurs.

Update April 3 2011: Here's an example of someone (who I've actually followed on another forum), who was told he had Lyme all these years and guess what?  Now all of the testing shows he does not.  He's wasted years of treatments and time to get better.  The reason why I've followed this person is because he has POTS too.  Unfortunately he is on the FDC yahoo group and will likely get suckered into that nonsensical bull.  Do I reach out?  I find most people don't want to be helped...

Part 2 in this series will talk about why I think I could have Lyme Disease and it did not come from a tick bite...

Getting Through the Heat Intolerance

Heat intolerance can make summer miserable.

As it starts to warm up I have been becoming increasingly concerned with how I will make it through yet another spring and summer.  We do not have central air conditioning in our house, so it can be quite unbearable at times.  Where I live it is not uncommon to see 90 degree days with very high humidity, so fans just do not cut it.  We put in window air conditioners, but they only do so much.  It is not quite like having an entire house with air conditioning.

With severe heat intolerance, I am constantly in the beginning stages of heat exhaustion.  With POTS this is just something you have to deal with I guess.  Not many people have been successful in treating their heat intolerance.  I am hoping chelation will help me, but I do not expect to see any results for at least 6 months to a year.  If I were doing IV's then I would likely see improvements much quicker, but for now I am sticking with oral DMPS.  I am still a little nervous about IVs and I don't know of any doctor who does them in this area. 

The beginning symptoms of heat intolerance are all too common for the POTS patient.  Here's a list of symptoms from the website medicinenet.com.  It is linked above if you want to read more:

* heavy sweating (not the case for a lot of POTsy-we do not sweat enough)
* paleness
* muscle cramps
* tiredness
* weakness
* dizziness
* headache
* nausea or vomiting
* fainting

The skin may be cool and moist. The victim's pulse rate will be fast and weak, and breathing will be fast and shallow.

At some time or another I've had all of these symptoms while bathing or simply sitting in my house doing nothing.  I do not sweat enough when I am hot.  I think that might be part of the issue.  However  I do sweat profusely if I am having a norepinephrine response to stress of some type or become extremely tachycardic upon standing.  Apparently these are controlled by two different parts of the CNS, so that actually make sense.  

I guess walking around in my bikini, keeping cold wash clothes on my head and getting cold baths is really all I can do.  The summer time is hell for me and I can not looking forward to it at all.

For those of you who got to the end of this article and think all of my symptoms sound "adrenal", think again.  I am so sick and tired of hearing about how I need adrenal support.  I am on adrenal "support" and it does nothing for POTS, nor heat intolerance, nor exercise intolerance, not the lightheadedness etc.  Sorry but I am just sick and tired of hearing this.  STTM and the adrenal yahoo group have both polluted all health forums, so everyone considers themselves experts on adrenals.  No you are not! Wake up, there are other body systems out there other than adrenals and hydrocortisone is not something you should be messing with unless you have real adrenal failure.  Period.

I made the mistake and listened to all of these armchair forum doctors for years.  No more!  /Rant off

Finished Round 2 DMPS

I finished round two of DMPS and I feel nothing.  I'm not getting any symptoms at all while chelating with this and it's great.  It's so good that I'm wondering if it is doing anything! haha  That's pretty much it for now.  We have a cold spell right now, but last week it was warmer and I could tell the shortness of breath is making a return.  Ugh...I hate POTS!

Round 2: DMPS and Humaworm

I started my second round of DMPS today, so I hope everything goes well.  A few days ago I also started taking Humaworm.  This is a parasite cleanse and over the past few years I heard a lot of good things about it, so my husband decided we would both give it a try.  I don't feel anything from it yet, so who knows?!  You take 2 pills in the morning and 2 pills at night.

That's really about it for now.