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. 

Keratosis Pilaris

I have suffered from keratosis pilaris (KP) for as long as I can remember.   For those who do not know what KP is, helpforkp.com states:

While  KP resembles goosebumps, it is characterized by the appearance of  small, rough bumps on the skin. Primarily, it appears on the back and  outer sides of the upper arms, but can also occur on thighs and buttocks  or any body part except palms or soles. (Often confused with acne.)

Pubmed says that KP does not worsen over time, but for me that is not true at all.  No one in my family has this as far as I am aware of  I found out my sister has it too... and most sites suggest it is genetic follicular disorder.
 
When I was a young kid (5), I used to get so upset because my knees were covered in bumps.  I would find a needle in my house (without my mom's permission of course LOL) and pick at them.  Inside I found a hard white substance and a small hair all wound up.  Even though it bothered me, no one could really see the bumps unless they got really close.  At age 5 no one was getting that close to me! haha  Looking back, I did not know how good I had it.

Around 6th grade when I started to shave my legs, my legs went from being pretty smooth looking, to atrocious in a few weeks.  As soon as I started to shave, all of those hair follicles began to plug up, turn red and eventually get infected if I didn't dig out the hair.  I had a huge problem with ingrown hairs on my legs and could not figure out what was wrong.  Some of my friends thought it was razor burn, but I knew that was not it at all.  KP is not razor burn. 

For years I avoided wearing shorts because of how awful my legs looked.  I hated wearing a bathing suit because they were all bumpy and nasty.  Shaving the bikini area is not fun for someone with KP...  As I got older and began dating people, I was soooooooo self-conscious of my legs.  It was downright embarrassing because it looked like I had chicken pox or some other type of rash.  To this day, I don't know how anyone could find my legs attractive... 

Eventually I started to look into it more and thankfully my husband found the answer.  (He is so much better using Google than me).  Sure enough he sent me a website that talks about keratosis pilaris and that was when I finally had the answer to my troubles.  All those years it was KP causing the nasty ingrown hairs, bumps and reddness on my legs.  If you do not have KP, be very thankful.  I told my husband, I'd spend a million dollars to get rid of this...lol That might seem completely insane to those of you who do not have it, but for those of us who do, it seems quite logical.

KP effects your self-esteem on so many levels.  You buy a nice sexy black dress and if you dare wear it without stockings of some sort, your bumpy legs will be the talk of the evening rather than your outfit.  Wearing shorts is only for extreme weather conditions, otherwise it is too embarrassing to be seen in public with the bumps.  Over the years, it has gotten much much worse.  I gawk over ladies who have nice, smooth legs.  I will never have that, ever.

Now it is not only on my legs, but the back of my arms, buttocks and anywhere else where I attempt to wax or shave hair. As soon as I do this, the KP bumps, ingrown hairs and reddness begins.  Once a patch starts to do this, it will NEVER again be normal. 

I have included in this post a few pictures of the back of my arm.  I want to figure out how to get rid of this crap.  Not many people have been successful within the KP community.  All of the things I have tried never worked very well...

Exfoliating and every day shaving seems to be the most helpful.  I have to scrap out the outer layers of my skin.  It is like my body is unable to shed skin properly so it begins to build up on the outside.  It is truly odd.

Let me know if any of you have KP too.   We can moan and bitch and complain about it together.  haha!

Almost Completed First DMPS Round

I am 2 pills away from finishing my first DMPS chelation round and I feel nothing at all.  No headaches, no tiredness, no hives...nothing.  This is very exciting to me because I was concerned it would be really terrible.  With all of the negativity surrounding DMPS, I really thought it was going to be "tough" with a lot of symptoms and weird side effects.  Perhaps it is too soon?  I guess only time will tell! 

I am following my doctor's advice on this one and will take a 4 day break.  There is no reason to overdo it and if I continue to do well, I will look into increasing my dosage or increasing the length of rounds.

The fact I had no hives is pretty amazing.  I just hope I'm not jinxing myself. haha

Recap: This was a 3 day round taking 50mg DMPS orally every 8 hours.  I started half-way through Tuesday, so I will be ending on Friday morning after taking my 9th dose. 

Took My First DMPS Dose!

After some confusion on Fedex's part, I finally have my DMPS and I took my first dose of 50mg orally.  I'm not sure what to expect and hope that I do not feel terrible or get severe rashes from it.  Many people will tell you how terrible DMPS is, how it is toxic and going to kill me because it is not FDA approved.  They link the DMPS backfire website and say not to take it. (You need to do your own research on this and need to know I've only come to this decision after long term use of DMSA with no help). 

A few of the reports I read on that website were mostly just doctors doing the stupidest things or it seems like a lot of these people had underlying conditions that were not being taken care of in the first place.  One story the woman started vomiting (which is pretty bad) yet she admits in her report that she has had these 'attacks' at other times in her life before the DMPS, yet she says it was all caused by the DMPS injection.  This makes no sense to me at all.  If it was DMPS, then why did you have episodes of this during other periods of your life?  This should make this woman want to figure out WHY she is vomiting rather than blame it on the chelator.

Some of the reports show they were doing DMPS IV's with amalgams still in! Stupid.  Or they were doing multiple IV's a week and/or not supplementing with vitamins at all.  All of this is stupid stupid stupid.  Those who favor DMSA are typically websites who are selling it too.  Since DMSA can be purchased over the counter,  these websites will of course tell you how bad DMPS is when they cannot prescribe it to you.  They want you to buy it from their website and will say whatever you want to hear.

Also comparing DMSA to DMPS is very different especially since DMSA is not given by IV, ever.  If DMSA was given by IV, then I suspect all of the same symptoms and side effects would be associated with it too.  Especially with people doing stupid things with it.  

If you are a returning visitor to my blog, you know how little I care about "FDA approval".  I'm in this situation because of the FDA and their approval for using amalgams in humans.

Why am I trying DMPS?  Because DMSA is not working.  I haven't been able to find any frequent doser who has RECOVERED with DMSA.  One person on the frequent dose chelation yahoo group has been chelating for 6 1/2 years with little to no improvement.  Uh it's not working and this is my cue to start looking elsewhere. I don't want to be here 6 years later no better than when I started.  I've already wasted 3 years of my life. 

DMPS is much better at pulling mercury out of the body and that's exactly what I want to do.  Dr. Cutler himself says it is better for most people because it does not disturb digestion or yeast issues and will not lower your neutrophils.  I don't have issues with my digestion, but my neutrophils are always lowered when taking DMSA.  DMSA gives me unbearable hives/rashes and I am curious to see if DMPS does the same.  If it does NOT then I know the hives are from DMSA itself rather than it moving metals around.

After ~17 rounds of DMSA I am not feeling ANY improvements.  All of the improvements I have had since starting chelation can be attributed to other things I have done with my health such as taking hydrocortisone, florinef and drastically cleaning up my diet.   The frequent dose chelation folks would just tell me to "keep at it" and all of this nonsensical bullshit.  No, I should have been feeling SOMETHING at this point.

I am following the "frequent dose" schedule for this, but with DMPS you take it every 8 hours which will be very nice at night!  I'm doing 3 day rounds and I have enough pills with this bottle for 4 rounds worth.  If things continue to go well, then I'll get the refills.  The doctor gave me 5 refills!

Japan Nuclear Issues : Taking Iodine?

I am worried about this nuclear plant issue in Japan.  There are at least 3 reactors that are facing meltdown.  This is very scary not only for those in Japan, but for the entire world.   This could have catastrophic implications for the entire world depending upon how bad this gets.  If I were in Japan, I'd get the hell out of there and get as far away from these nuclear plants as possible.  Much further away than the 12 miles....  US Navy ships have detected high levels of radiation and have moved the ships further away.  The catch is these ships were over 100 miles northeast of the plants!  There are reports that the radiation from Japan will be reaching the US. 

As you can probably tell I have been studying this pretty much non-stop since the earthquake hit.  Ever since my bad bad reaction to taking iodine in 2008, I have been completely against any form of supplemental iodine.  I warn people to do it as their own risk.  You do not know how your body will react to it!

You have alternative news medias telling people to take iodine to protect the thyroid against the radioactive iodine.  In a perfect body this makes sense and may be very helpful.  Most of those people on these sites or alternative news media consider taking iodine completely harmless.  I can attest that it is not completely harmless.  It will cause your thyroid to create more thyroid hormone.  In my case, A LOT more hormone.  Those people already with an autoimmune thyroid condition but undiagnosed could send themselves into a thyroid storm...If that happens, you better get yourself to the hospital immediately.

The amount of iodine in the potassium iodate supplements intended for nuclear fallout accidents is VERY high.  I found my supply of 200 capsules of KI03. 1 tablet is 85mg (35mg iodide, 50mg elemental iodine).  The dosage is 2 tablets a day for an adult.  That's 160 170mg of iodine...HOLY COW!  I have never taken that much iodine, ever.  When my hair fell out, I was only taking 1-2 Iodoral tabs a day.  1 Iodoral tab has 7.5 mg iodide / 5 mg of iodine.  Huge difference there.  Even at these low doses, I felt completely OUT OF MY MIND as if I had drank about 10 espressos one after another.  Some people will say it's a bromide detox or some other bull, but I think it was simply the increase in T4 hormone production, which was then converted into the active thyroid hormone T3. 

Even though I vowed to never take iodine again, if this situation in Japan escalates and it is found the radiation has traveled to the US, even I might take some potassium iodide.  I cannot believe I just typed that...I am concerned it may trigger an autoimmune response in the body though like it did before in 2008.  Then what am I supposed to do.  I am very worried about all of this.  However, I suppose an autoimmune disease from iodine is better than having radioactive iodine in my thyroid.  The lesser of two evils is not very helpful in this situation.  Either way I'm going to suffer greatly. 

As it stands now my thyroid works pretty damn well, so I do not need to add any other health issues.

Current Events: Japan's Reports Aren't Adding Up

Since I have chronic health problems no one seems to understand, I take stories like those coming out of Japan very seriously.  Environmental toxins are something we as a society need to be more concerned about and take more appropriate precautions. The funny thing is, is I'm not a tree hugger whatsoever.  However, we allow companies and industries to pollute and destroy our environment, yet blame the little guy (you and I) for causing all of the pollution.  We are the ones to be taxed and punished while companies get a free ride to do whatever they please.  /sigh

I assume by now everyone is aware Japan is having issues cooling their nuclear reactors.  I've been following this story practically all of yesterday and now throughout today.

What we've been told does not add up.  Of course governments are known to minimize risk or even lie to its citizens.  Some people will tell you this is to keep hysteria to a minimum but I think in most cases its to just hide their incompetence or just hide information in general.   

From what I've gathered in the news (I do not own a TV so all of my reports are from online sources), is that the reactors shut down as expected when the earthquakes hit.  However even after the reactors are shut down, they need to be cooled for a period of time until all of the heat is removed.  This is what failed to occur because back up generators did not work properly.  The news says that these generators were damaged due to the water from the Tsunami.

Things have escalated since last night.  There was an explosion at the No. 1 Nuclear power plant early this morning.  I woke up to see that headline and my heart just sank.  Now I know absolutely NOTHING about nuclear power and how these things work, but this cannot be promising.  Officials keep saying that any amounts of radiation which have been vented or released into the atmosphere are not harmful.  Yet they have now increased the mandatory evacuations from 10 to 20km (12.5 miles) and they are not allowing anyone within 60km (~37 miles) into the region.  Common sense tells you that this does not make any sense...

In addition to those reports, International Atomic Energy Agency (IAEA) are considering handing out iodine to residents in the area of the nuclear plant.  They are also warned not to turn on air conditioners nor drink tap water according to this report.

There are now three workers who have been exposed to high levels of radiation, but did not need decontamination treatment.

Lastly, reports claim that there has been no meltdown, yet radioactive cesium and iodine was detected near the plant.   This report from Kyodo News, says that they have had to admit there was some meltdown, yet  those headlines are not being carried.  In fact the denial is still happening (at least online).  Perhaps the TV reports are caught up by now.   


While all of this is happening, we are being told at the same time everything is safe.  ...Yeah right.

Update 3:05PM - People are now being scanned for radiation at evacuation centers.  Another report here, which ironically also says a nuclear catastrophe has been averted.

So obviously something fishy is going on here and for the greater good of the residents in Japan and the world, we need the truth.   "They" say there has been no damage to the steel container, but how can you honestly believe them at this point...For hours they were saying no radiation was released yet there has been detection of radioactive cesium and iodine.  

Updated 3:10- The Nuclear and Industrial Safety Agency board is saying the only way the explosion occured at the plant is by meltdown of the reactor core.


And people wonder why I am so critical of the government, doctors and mainstream medicine?  They just say whatever is convenient at the time and whatever collateral damage that occurs means nothing to them.  If you are one of the ones who gets sick...well screw you.  They will ignore you and turn their back on you. 


I pray this turns out OK, but I don't have a good feeling about it.

Ride My Bike Every Day

I want to get more active and try to feel a little better about myself, but I have to be realistic. With POTS or any chronic health problems, self-esteem and self-confidence goes out the window.  How can you be happy with yourself when you cannot do anything normal with your life? 

I have decided for the rest of the month of March, I will ride my recumbent bike for at least 5 minutes a day.  I know this sounds truly pathetic.  I am 26 and can only do 5 minutes of bike riding? WHAT? I CAN do more, but I have to keep this time very low so I do not injure myself or overdo it.  I used to ride my bike for MILES and MILES on a daily basis when I was in my early teenage years.  I was known in the neighborhood as "the girl who always rides her bike".  When my family would vacation at Pymatuning State Park, I'd bike ride at least 10-15 miles a day easily and I loved every moment of it.  Even back then though I was suffering from POTS, however it seemed more easily controlled.  Having the wind in my face while riding always helped to keep me cool.

5 minutes should be doable... Just have to keep motivated.

Heading Back to Oral Surgeon

Update: The pathology did not come back yet, but everything looks good.  The visit took all of 3 minutes.
Update 2: Pathology came back and all is well.  It was definitely an amalgam tattoo.  Nothing was noted other than this on the report.  I'm glad it is over with now and it is finally starting to heal really well too.

In about an hour I'll be heading back to the oral surgeon to make sure everything is OK.  Recap: I had an amalgam tattoo removed last Tuesday that had been in my mouth for almost 20 years.  It was about time to get it out and I do believe mercury leeches from these damn things.

Ever since the removal of the amalgam tattoo I have not been feeling quite right.  I don't want to immediately jump to the conclusion it is mercury, but it certainly makes me wonder.  The weird panicky feelings I was having last year started to come back yesterday which was just strange.  I had been doing really well and then I don't know what triggered my brain to start thinking obsessively.  Very peculiar.

I have been having these weird dull headaches.  The best I can describe it is almost like a burning.  Have you ever accidentally snorted some pool water and your sinuses hurt and burn for hours?  That is exactly what my headache felt like.  Perhaps I just picked up a mild sinus infection or something.  Quite weird though!

Hopefully they will have gotten the pathology back and they will let me know what they found in the tissues.  I will ask nicely for a copy of the report and then will post what it said.

I got the DMPS prescribed to me (after a little sweet talking) and it is being compounded by College Pharmacy.  I really like this pharmacy as I never had any problems with them and anytime I had questions for the pharmacists they were more than helpful.  This is the same place where I got my Methyl B12 injections.

The DPMS is more costly than DMSA.  It is about $2.75 per 50mg/capsule.  I guess it could be worse.  Years ago DMPS was running about $5 a capsule.  I'm going to be taking the DMPS 3 x a day for 3 days.  Then have 4 off days.  If everything goes well I may ask the doctor to up the amount of chelation days.

*Fingers crossed*

NutrEval Doctor Commentary

Warning: Long technical post

I was too tired last night to get this posted, but yesterday I got the commentary provided by Genova Diagnostics to the results of my NutrEval test.  There are some interesting things listed and I feel I did a very good job interpreting my own results.  Genova will only give information on things that are either elevated or below range, so even if you are 1 or 2 points away from being out of range, nothing is provided. The commentary results are not provided to the patient, so this is why it took so long to get them (as I had to get the doctor's office to copy them). 

This commentary confirms I definitely have some type of mitochondrial dysfunction especially when it comes to utilizing B vitamins. The commentary is way too long to post on here (about 12 pages), so I will quote specific parts I feel are important.

For those of you who don't know what I am talking about, you can read the post about my NutrEval results. The NutrEval is a comprehensive test by Genova Diagnostics which looks at urine amino acids, branched chain amino acids, organic acids and fatty acids. This test only cost me $150 when submitted through my insurance through the "PayAssured" program. I believe it costs more now though.  It must be ordered by a doctor who has an account with Genova Diagnostics. Getting the blood drawn is a pain in the butt because the lab must be willing to prepare the vials immediately.  You can't just go into Labcorp or Quest Diagnostics and have this done.

Do I recommend this test?  Yes and no.  If you are not the type of person willing to research the hell out of your results, then it will be of no use to you. No doctor understands how to interpret them and you will be on your own. Upon typing NutrEval into google, I find my own forum posts asking for help and the few forum posts that are not my own, are others looking for interpretation advice with little to no luck. This test can be quite helpful if you put in the time to understand the results though.  It gives you a nice peek into what your body is actually doing on a cellular level.  But if you cannot even understand basic blood work results, then I do not recommend it. I don't want to sound rude, but basic blood tests are Kindergarten level compared to the results you will receive from the NutrEval. 

There is a good handbook from Metametrix that is quite useful when interpreting the results. You can find the book on their own website at this link.  

Areas of Interest

Alpha-ketoglutaric Acid (Alpha-ketoglutarate or AKG)-  36.5 (0.5-16)  High

There was a lack of information online about what it meant to have elevated AKG.  I could find information if it was low, but elevated levels seemed to be very rare.   What I found was that there was a good probability the dehydrogenase complex was not working properly.  Something is inhibiting it from converting AKG to the next metabolite which is succinic acid.  The commentary confirms my suspicions. 

Elevated AKG can be due to specific weakness in the alpha-ketoglutaric acid dehydrogenase complex that converts AKG to downstream citric acid cycle metabolite, succinic acid. 

It goes on to say that this requires B1, B2, and B3 in specific forms (which you cannot buy or supplement with directly) and also lipoic acid.  Elevated levels can also exist due to a weakness in decarboxylation of glyoxylate and alpha-ketoglutarate which can cause kidney stone formation.  This would need to be further investigated by testing urine levels of oxalate and glyoxylate, but it is not very common.

Decreased activity of this complex is seen in Alzheimer's Disease so that is interesting. 

Formininoglutamic Acid (FIGLu)-  19.5 (<12.1)  High

There was quite a bit of information about this one online. I learned I was probably deficient in B9 and started to take even more Folate.  My attempt at taking Folinic Acid resulted in continuous heart palpitations which became so severe I thought I would need to go to the ER.  I sought help from a local urgent care, but you can read the hilarious story from the visit in this post here.  The Sinus Arrhythmia became so pronounced it would cause heart palpitations upon exhale. 

The commentary on this one talks a lot about the THF form of Folic acid and B12.  Histidine supplementation can raise this in the urine, but I was not taking that at the time of the test.  It says to investigate Uric acid, succinylpurines, inosine and adenosine if levels of FIGLu continue to be elevated after supplementation of folate, B12, B6 and lipoic acid.    Nothing too groundbreaking in this one in my opinion.

Methylmalonic Acid (MMA)-  25.9 (<19)  High

Once again there was a lot of information about this one online.  I learned this meant I was B12 deficient, which would have made sense if I hadn't been giving myself daily injections for months prior to the NutrEval test.  When I saw this I started to look at alternative reasons why this could be elevated despite high dose B12 supplementation.

The commentary had an alternative reason why this could be elevated.

Less common causes of elevated MMA include deficiency or dysfunction of the apoenzyme, methylmalonyl-CoA Mutase or deficiency of the coenzyme, deoxyadenosylcobalamin, needed for cobalamin synthesis.  In such cases, megadoses of B12 as hydroxycobalamin are appropriate... 

Interestingly supposedly my great grandparents had pernicious anemia, but testing back then was probably not even close to what it is like now.  How would they really know if it was pernicious anemia or a deficiency in a coenzyme? I have been tested for PA and I do not have it, thankfully.

Even this alternative reason doesn't seem to work because it says to take 1000-2000mcg of hydro B12 for a few days and then do megadoses orally.  Well I think taking daily injections of MethylB12 for months surpasses this recommendation.

Beta-aminoisobutyric acid (B-AIB)- 354 (22-192) High

There was a lack of information about this one.  One thing I did find was that in some cancers this becomes elevated and they use it as a way to determine prognosis.  Well considering I do not believe I have cancer, this was not a concern but it did not help to explain why it was high either.

The commentary provided by Genova was especially enlightening and I think it explains some of the other elevations on my test.

B-AIB is a product of catabolism of pyrimidine nucleotides and it is an intermediate of valine-to-succinic acid metabolism.  In valine-to-succinic acid metabolism, B-AIB is directly formed from methylmalonic acid semialdehyde.

It gives 4 reasons why this would be high.

1. Vitamin B12 coenzyme function (as adenosylcobalamin) is weak.  Elevated methylmalonic acid in urine (methylmalonic aciduria) would confirm this.  Vitamin B12 deficiency or adenosylcobalamin coenzyme defect would be causative.

Bingo! I think this is exactly what is going on with my body.  I cannot make the active form of B12 which is why MMA, FIGLu and B-AIB is elevated.  This would also explain why I need a lot of B12 to feel the effects from it.  If my body cannot make the adeno form of B12 at an appropriate rate, it would only make sense that I need more of it to get past the enzyme issue. 

2. Vitamin B6 coenzyme function (as pyridoxal phosphate) is weak.  B-AIB also transaminates to its keto analog. 

This is another good possibility too. This would explain other elevations in the test too, which is quite amazing to me.  My test does make sense after all. More on this one in the Leucine and Isoleucine section. 

3. The specific B-AIB to pyruvic acid transaminase is weak or absent.  This is considered a benign variant of metabolism and is present in about 25% of Chinese and Japanese individuals and in about 8% of Scandinavian and Northwestern Europeans.

This is not me at all, so I don't think that's the cause.  I'm strictly German/Austrian as far as I know!

4. Accelerated catabolism of DNA and RNA is occurring.  Catabolism of damaged or diseased tissue, tumors and malignancy feature increased formation and excretion of B-AIB.

Even though I do not believe I have tumors or any cancers, I could see my body having to repair a lot of damaged tissues with the increased heart rates.  This is something I will certainly keep in the back of my mind.

Taurine- 957 (68-538)  High

This one is sort of tricky.  There is not a whole bunch online about it because it is mostly to do with supplementing with it rather than talking about actual test results. 

According to Genova's commentary there are a ton of possible explanations for an elevated Taurine level in your urine. You can be wasting Taurine so you are actually deficient or you can in fact be high in Taurine.  Take your pick I guess.

I believe in my case this is likely what is occurring with me.

In molybdenum deficiency or sulfite oxidase impairment, elevated urine taurine results as a mode of sulfur excretion.  Renal wasting of Taurine can be medically significant if it affects one or more of taurine's many important functions.

Then it goes on and lists all of the functions for Taurine, but were too long to list here.  I think molybdenum is helpful so I will continue to take it.

Tryptophan- 112 (28-111)  High

The commentary says that Hartnup Syndrome is not present because other elevations are not present.  I have no idea what that is but I'm glad.  haha

It says I am likely wasting tryptophan and have low blood tryptophan and low serotonin.  Symptoms consistent with tryptophan deficiency are mainly those of serotonin insufficiency which may include: insomnia, anxiety, enhanced response to external stimuli (light, sound) and abnormal food cravings.

This is definitely interesting and I will keep this in mind too!

Leucine- 100 (30-87) & Isoleucine- 77 (24-58) High

In my search online having any branch chain amino acids elevated was usually serious.  This is definitely not normal and I have not found another person's NutrEval who showed these as being elevated.  There is a very rare condition which causes all three BCAA to be elevated, but since only 2 of 3 were for me, I know that this is not the cause.  Thank goodness!

The commentary for this has been extremely helpful and I really wish I had got a copy of this sooner.  It all makes sense to me now.

...This could indicate a weakness of transminase enzymes, limited quantities of alpha-ketoglutaric acid (AKG), or increased need for vitamin B6 as coenzyme pyridoxal phophate.

The light bulb went off in my head after reading this. Since my AKG is definitely NOT low by any means, then it has to be the coenzyme pyridoxal phosphate. If you recall from the beta-aminoisobutyric section, increases in that can be caused by:

2. Vitamin B6 coenzyme function (as pyridoxal phosphate) is weak.  B-AIB also transaminates to its keto analog.

This is where the dots are beginning to connect and make sense. The Isoleucine and Leucine elevations are likely caused by the same issue causing elevations in the B-AIB, MMA and FIGLu.

The problem with all of this is that I cannot take the pyridoxal phosphate form (P5P) without suffering from heart palpitations. Is it worth another shot? I will have to do a little more research on this and see!

Clearly I have some sort of mitochondrial dysfunction when it comes to utilizing B vitamins

Glutamic Acid-  56 (5-21) High

There were several reasons given for an elevation in this, but most of them did not apply to me.  I do not eat MSG so I know that was not the reason!

It says this can occur with impairment of purine metabolism.  I have no idea how you would know if this was your issue.  Another suggested cause is metabolic acidosis, which I suppose could be a possibility.

In metabolic or renal acidosis, glutaminase in the kidneys forms glutamic acid and ammonia which becomes basic ammonium hydroxide.  This is a normal pH balancing mechanism for compensating acidosis. 

Sarcosine (N-methylglycine) 58 (<48) High

This elevation goes back to the issues with B vitamins.  When Sarcosine is elevated it is recommended to supplement with folic acid.  Well considering I was taking a large dose of Folate prior to this test, there must be something else at play here.  I haven't completely been able to get the larger picture on this one, but I'm sure someone who is more knowledgeable about this could.

Deficiencies of the cofactors associated with sarcosine catabolism.  These are folic acid as THF and Vitamin B2, riboflavin, bound to the sarcosine dehydrogenase enzyme as FAD.  The methyl group fragment removed from sarcosine is at the oxidative level of CHO and can form formaldehyde if THF is insufficient.

Mainstream medicine says that having elevated Sarcosine is benign and basically warrants no further evaluation (except to supplement with folic acid).

I know this was very long, but I wanted to go through everything.  I may try to take some P5P and see what happens to me.  My doctor was going to give me another refill for B12 but maybe I'll get the adenocobalamin form instead.  It is more costly though and is less stable than the MethylB12.

Hopefully this may be helpful to someone else who is sick with some stupid chronic illness.  :)

Feeling Odd, DMPS and Robins

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.

Amalgam Tattoo is Gone!

Amalgam Tattoo Removed

Well today I got the amalgam tattoo removed.  I was soo nervous!  My biggest concern was this nerve my previous dentist talked about, so I brought it up.  The oral surgeon said there was a nerve there (he had a name for it), but it is very large and isn't something you would accidentally hit.  He said if there was damage to the nerve that I'd lose feeling in my lower lip.  However he assured me it wasn't going to be an issue and if it was he would talk to me about it.  Phew ok that made me feel A LOT better.

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.