A little note about carnitine and CFS

I just wanted to drop a quick line.

Yesterday I posted about my trying to fix my problem with being addicted to steak, an addiction that every single doctor I've spoken to has ignored, by taking L-Carnitine.

Well, guess what?

I got an email today from the Fibromyalgia and Fatigue Center, titled "Acetyl-L-Carnitine for CFS and Fibromyalgia". It appears that the Center has discovered that supplementing one's diet with Carnitine is great for people suffering from chronic fatigue because they're usually low on Lysine.

Fancy that.

However, they go on to say that acetyl-L-Carnitine form is much more effective to take than just L-Carnitine (which is what I've been trying). So I am going to go pick some up tomorrow-- along with some taurine and CoQ10 (other really useful aminos in high concentrations in meat) just in case.

Just thought you might be interested, and I guess I wanted to give myself a bitter pat on the back-- seeing as I was on the way to discovering that I might be addicted to steak because of carnitine all by myself. Where were these people when I have been needing this info for years?

(speaking of bitter-- it turns out that carnitine and taurine are often added to energy drinks. If I didn't already have reactive hypoglycemia, I might've discovered an alternative to steak long ago...)


I am copying and pasting a lot of what they have to say from the fibromyalgia and fatigue center's newsletter (their website is: http://www.fibroandfatigue.com/index.php) so you can see what I'm talking about:


"Acetyl-L-Carnitine for CFS and Fibromyalgia By: Jacob Teitelbaum, FFC Medical Director

Low levels of the carnitine compound acylcarnitine in the blood or muscles of people with CFIDS/FMS have been found by two different research centers.9 Carnitine plays many roles in the body. It has the critical function of preventing the mitochondria from being shut down when the system backs up. It does this by keeping a substance called acetyl coenzyme A from building up and shutting down the TCA cycle and the electron transport system, the cell's effective energy burning systems. (More about the electron transport system later in this chapter. [callahan-- what chapter?! Is this taken from some book? and if so, which frickin' one?!]) Also, without sufficient carnitine, the body cannot burn fat (and, in fact, makes excess fat), resulting in large weight gains.

L-Carnitine is a naturally occurring form of carnitine that is only found in animal flesh. Beef is high in carnitine. Carnitine can also be synthesized in the body. This process requires adequate amounts of the amino acid lysine, which is low in rice-based vegetarian diets (which also have no carnitine).10 I suspect that the real reason many CFIDS patients who take lysine to prevent herpes outbreaks see their symptoms improve may be that this increases the body's carnitine production.

In my experience, and that of other clinicians, taking supplemental L-carnitine has not been very helpful, and D-L-carnitine can actually worsen symptoms.11 Taking 500 milligrams of acetyl-L-carnitine 500 milligrams 2-3 times a day, however, can be very helpful. It has no side effects except for its cost, usually $1.00 for 1,000 milligrams. Adding 500 to 1,000 milligrams of L-lysine, which is cheaper, can decrease the amount of acetyl-L-carnitine you need to take by helping your body to make its own carnitine. The body also requires vitamin C (I recommend 200+ milligrams a day) and B-complex vitamins to make carnitine.12 Lysine, B Complex and Vitamin C are all present in the Energy Revitalization System vitamin powder. I suspect that most people can lower their dose of acetyl-L-carnitine after 12-16 weeks-for example, to 500 milligrams a day-or even stop it. Any brand is fine as long as it is pure acetyl-L-carnitine.


References:
9. A. V. Plioplys and S. Plioplys, "Amantadine and L-Carnitine Treatment of Chronic Fatigue Syndrome," Neuropsychobiology 35 (1) (1997): 16-23. H. Kuratsune, K. Yamaguti, M. Takahashi, et al., “Acylcarnitine Deficiency in Chronic Fatigue Syndrome,” Clinical Infectious Disease 18 (3 Supplement 1) (January 1994): S62–S67.
10. V. Tanphaichitr and P. Leelahagul, "Carnitine Metabolism and Human Carnitine Deficiency," review article, Nutrition 9 (3) (May-June 1993): 246-252.
11. R.E. Keith, "Symptoms of Carnitine Like Deficiency in a Trained Runner Taking DL-Carnitine Supplements," letter, Journal of the American Medical Association 255 (9) (7 March 1986): 1137.12. H.E.F. Davies, et al., "Ascorbic Acid and Carnitine in Man," Nutrition Reports International 36 (1987): 941.""

Further adventures in trying to get healthy

I've been taking Diflucan for about a week now. It's gotten to the point that it doesn't seem to have any effect at all. I still have the same digestive problems I always have had-- although my nose runs less, I must admit.

I suspect that, when I see the expensive doctor again, I'll be put on a stronger dose for another month.

Meanwhile, I have begun to self medicate a few things. Maybe that's a bad idea, but it's nigh impossible to get in touch with the doctor between visits, so I feel that I'm on my own.

About a year ago, I had explored augmenting my diet with coconut oil. But, when I ate it, I had a horrible reaction. I assumed that I was allergic to coconuts from that point on, and avoided it everywhere I could.

I now know that what had happened is I'd had a herxheimer reaction-- a reaction caused by injesting or otherwise being exposed to something that causes a die off of infectious bodies, be they viral, bacterial, fungal, or parasitic in nature.

Sure enough, I can now eat coconut oil without any reaction whatsoever. Indicating that the diflucan did kill at least some of the nasties in my system.

Coconut oil gives me additional calories without carbs, is good for my skin, contains caprylic acid (along with others) which play havoc with bacteria, protozoa, and fungus, and is primarily made of medium-chain triglycerides, which are directly used by the mitochondria in each and every cell of the body. And it's tasty.

I also have been increasing my intake of probiotics from those given to me by the doctor. She had said in the consultation that they had to be in the billions to be effective-- then the office manager gave me the brand they sell, which has the bacteria cultures only in the millions.

So I went out and bought some "Ultimate Flora" critical care probiotics. They've got a few billion active cultures, so I figure that'll help.

Meanwhile, I am still trying to figure out another part of my health puzzle that no doctor seems to care about-- the fact that I cannot go a day without eating red meat.

Say I had eggs and bacon for breakfast, some chicken for lunch, and some salmon for dinner. That night or the following morning I would start getting really bad pains in my back, neck, side of my head (the side varies), behind my eyes, my sinuses (most notably on the side the head already hurts), light sensitivity, TMJD, overwhelming fatigue, clumsiness, trembling, slurred speech, changes in vision... the whole shpeel.

And this problem, if not fixed, can last for days, the pain getting worse to the point of nausea.

What fixes it? A few meals of red meat.

No joke. I also need to be sure I don't mess up my blood sugar in the mean time (because the symptoms are similar to a hypoglycemia episode), but just eating a few steak meals in a row seems to make all that pain go away.

And if I travel, I make a point of eating steak twice a day (maybe bad quality, chewy buttmeat steak, but steak nonetheless), and almost never have a bad episode.

To make matters worse, the steak can't be too well cooked, or it doesn't work as well. And although ground meat will work in a pinch, I need more of it to accomplish the same thing.

I told this to doctor, after doctor, after doctor, and they all ignored me. It sounded so far fetched.

And believe, it sounds far fetched to me too, but that doesn't make it any less true... and any less a nightmare.

Imagine not being able to skip a day of red meat. Ever.

But I think I've had a break through.

You see, I'm suffering from a chronic, high titer case of Epstein Barr. That's a type of herpes virus and can hide in your body like the kind that gives you cold sores or chicken pox. It needs certain conditions to really get to express itself and reactivate-- an acidic environment, a weakened or extra distracted immune system, and low lysine levels.

L-Lysine is an amino acid that is a building block for several other important amino acids, and exists in direct opposition with another amino acid, arginine. L-Arginine and Lysine can't exist in the same cells. One is always pushing the other out.

The herpes virus (whatever sort you have) hates Lysine and loves Arginine. It needs the balance of power to lean towards Arginine and will actively supress Lysine in an infected person's body (supposedly).

Thus, people with active viral infections likely are low on Lysine. This is especially true of those who suffer from cold sores and fever blisters. Those outbreaks can't happen if the body has enough lysine in it. However, the amount a body needs does change, so there's no silver bullet dose. Further, the body does need Arginine for things, so you can't afford to totally push it out of the way.

So, I've got chronic Esptein-Barr. And I am addicted to steak. What do these two things have in common?

Oddly enough, Lysine.

I was doing research on what nutrients I might be missing in my ongoing attempt to remain healthy after the diflucan (you see, getting rid of the infection is only part of my problem, I need to keep it gone too). I came across a document listing the nutrient components of red meat.

And guess what? Red meat contains the most L-Carnitine of practically any food available for humans (http://ro.uow.edu.au/cgi/viewcontent.cgi?article=1053&context=hbspapers). Grinding it makes the red meat lose some of it's effectiveness, and overcooking it also loses carnitine.

L-Carnitine is an amino acid made in the body from L-Lysine and methionine. If it can't be made, it has to be injested. I am low on Lysine due to my viral infections. Therefore it is likely that I am not able to make adequate amounts of carnitine on my own.

Therefore I need to eat foods high in carnitine every day.

Tada, steak.

Furthermore, chronic fatigue suffers often have mitrochondrial disfunction issues. And wouldn'tcha know it? L-Carnitine is specifically used by the body for "the transport of fatty acids from the cytosol (intracellular fluid) into the mitochondria during the breakdown of lipids (or fats) for the generation of metabolic energy." (http://en.wikipedia.org/wiki/Carnitine)

To that end, I have decided to take L-Carnitine supplements in order to see if I can kick my steak habit.

There weren't many options at my small, local health food store, so I bought the only one I could, 500mg from Solaray. That's about 400mg more than I really need, but pill forms of amino acids aren't as readily absorbed as those from food-- so I figure I'll probably get about 200 or maybe 150 mg's from it.

Now, if the carnitine doesn't work, I can try for L-Taurine. It's another biggy that meat offers. But the symptoms of a carnitine deficiency more closely resemble what happens to me-- so I'm going to try that first.

In addition, I figured it wouldn't hurt to add more Lysine to my diet as well. In addition to its antiviral properties, it also works in conjunction with arginine (which I get a lot of in my diet) to build muscle. I am a bit hopeful that maybe this will help me regain muscle mass and stamina when working out as well.

So as of today:

-Diflucan is causing no side effects and no apparent improvements except I don't get the sniffles when I turn on the AC like I used to (a blessing, if minor), and I can eat coconut again.
-I started taking the compounded T3 at 10mcg once a day. I am not sure if it's doing anything, honestly. It isn't causing me harm as far as I can tell.
-Because I've been doing to the T3, I've cut down the synthroid from 88mcg to 75. I started about four days ago, and today feel really wiped out. Not sure if it's the synthroid (which I thought, since it is the only way my body can create reverse T3, I needed to cut back on), or something else. Will stay at 75 til the end of the week to be sure.
- Can tolerate the ribose better at this point, doing 2grams twice a day (at this point, for comparison, the container says I should be doing 5grams three times a day or more).
- Am doing the DHEA/Pregnenolone supplement once a day, but making it later in the day. It seems to help me get restful sleep, but that could be coincidence.
- Have added Magnesium citrate to daily routine in attempt to stablize my digestion. Things don't seem to passing through my system as quickly as they should. I am blaming the Diflucan, but gahd knows what the problem really is.
- Taking higher doses of probiotics at this point (although there seems to be no change there either)
- Finally, going to take 500mg of L-Carnitine and L-Lysine starting later today.

Wish me luck.

Things I've learned about Diflucan, compounded T3, and me

In my continued adventures, I started taking 200mg of diflucan over the weekend.

I started with feeling a little toxic about forty minutes after taking the drug, and otherwise just feeling a little tired. No other changes or side effects. I am wondering if this is working at all.

One thing I did notice, my nose ran like crazy, like I was coming down with a cold, when I sat next to the air conditioner. Especially for the first few hours after taking the drug. I had been having intermittent runny nose and stuffiness that I attributed to the AC before, but this was extreme.

The next day I took it, about thirty minutes later, felt a little toxic, then for about an hour and half, felt pretty disconnected, exhausted, and weak. Did have to hit the bathroom (urgent trips are completely not normal for me), but after I felt really, really good. Like I'd taken a hit of muscle relaxants and some Xopanex. It was kind of weird, in a good way, but unnatural for me.

And, of course, it didn't last. When I got home (all of this happened while at a brunch with friends, of course), and once again next to the AC, I got some light sniffles, but nothing major.

The next day, took the Diflucan at the same time of day, and soon felt completely exhausted, like I'd run a marathon. I am not sure what happened. I strongly suspect it was blood sugar (but it could also be the DHEA or ribose I took too), as I'd accidentally not included a lot the day before (habit). To compensate, I ate a number of carbolicious things (rice cereal with rice bran added, almond and rice flour pancakes- with forbidden cream cheese, and a big dose of ribose). I thought that had beat the low blood sugar, assuming that my insulin resistance would protect me from a crash.

I was wrong.

The following day I awoke in pretty extreme pain and fatigue. I had to go see my old endocrinologist that day too-- which is always taxing. She didn't want to hear about the new doctor and my taking T3 to supplement the synthroid. (I mean it. She didn't argue, she simply disregarded me telling her. Weird.) When I told her that I had been tested for epstein-barr and mycoplasma pneumonia and came up high on both, she immediately insisted I go see a infectious disease specialist. She insisted that the doctor who first ran the blood test and that I was actively seeing was hardly more than a chiropractor and that I needed to see a real doctor.

But, she's a "real" doctor, and refused to do the blood tests that now are such a big deal. Why should I want to go somewhere she considers "real" when "real" didn't get me anywhere in the first place?

Sigh.

Later that day, I took an extra DHEA and some more ribose (which I struggle with because it is pure carbs and my body can't handle it well. I use 1/5th the normal dose).

That night, the pain increasing, I actually ate some craisins (tried rinsing off the sugar first-- futile). It was a desperate act that should have caused a serious headache. Instead, the pain started to go a way a little.

Also, while I was at the endo's, I'd gotten a package from the compounding pharmacy. My T3 prescription had arrived. I discovered that I have to be very, inconveniently, strict about how I take it. It will bind to practically anything too easily, so I have to take it two hours after a meal, and one hour before one, every time. Great. That means I either have to wait an hour after I get up to eat (not really an option on busy mornings), or I get used to waking up an hour before I need to, taking the T3, going back to sleep for an hour.

I mean, I could take the T3 before bed, but I often eat close to bedtime in order to maintain my blood sugar levels through the night.

That night, at about 4:25am, I woke up feeling absolutely refreshed and great. Like I had during the weekend. I tried to go back to sleep, and eventually did for an hour or two. Then got up, took the T3, and went back to sleep.

Two hours later, I woke up feeling better than ever. It was great. And the feeling lasted all day-- took my diflucan, all the other meds, etc. (although I did blow off the ribose-- it was giving me headaches- I also cut down on the DHEA, because I wasn't sure that it wasn't the cause of my fatigue)

And today? Well, not that good. I didn't sleep well. Had temperature problems (sweats, hot flashes, cold spells), all night. And the pain that had gone away, was back again. Fatigue, achiness, and now a sore throat.

Not good (and I have to talk to the editor today). I took the T3 and tried to sleep a little more, but to no avail. Got up, did breakfast, felt better. Still fatigued, but now just the normal fatigue I get when I sleep while suffering from low blood sugar.

After breakfast, I took the diflucan. I am on the fence as to what symptoms it is causing, and what is caused by all the other, supposedly harmless, stuff I am taking.

I do know that, after taking the diflucan, I turned on the AC (humidity is intolerable here) and my nose ran only a little bit. After the diflucan fully kicked in, my nose isn't running and is only a little stuffy.

Could it be that that "allergy" I've "always" had is, in fact, a fungal infection? Interesting.

Meanwhile, I have noticed sores starting in my mouth and throat. Will have to see how that progresses.

Also of note, after I received the T3 from the pharmacist, I called in with some questions and learned that the doctor who is treating me is kind of new. She's "good" he says, but she's really just following a protocol. She won't be likely to be able to be inventive or flexible.

It makes me think, maybe I should check that "real" doctor, the infectious disease doctor the endo' suggested. Maybe it wouldn't hurt to get a second opinion if I am being treated by someone blindly following someone else's doctrine.

For example, her "protocol" says if someone's intestines are infected, have them take 200mg of Diflucan. But, it is now common practice to start with a loading dose of 400mg first, then drop to 200 after. But her protocol was written before that discovery was made. So here I am, with an obviously pernicious, chronic infection, not taking the most effective dosage course. (I found this out, of course, after starting the medication) There may be reasons for this, but none that she mentioned to me.

Oh, and by the way, the T3 (10mcg, supposedly time released), doesn't seem to be doing anything at all. Just to be clear. ; )

So that's where I stand.

I have to schedule my life around these drugs at this point (T3, synthroid, DHEA/prenenolone, ribose, maitake, diflucan, ribose, and more), dealing with a changing sea of side effects, while trying to get on with life.

Right now my biggest problems, as I see it (but I could be wrong...), are the soreness and pain coming back, fatigue, and these sores that are starting in my mouth and throat. They are not uncommon with Difulcan, but I don't like it.

All in all, I bet that the treatment for my intestines will be the easiest I'll be facing. I am pretty sure both the epstein-barr and mycoplasma pneumoniae will require IV treatments. I am expecting to be completely bed ridden with a side of seizures for those...

Ahh, the irony. Catching up (part 2)

Howdy.

In part one I reviewed the whole, "doctor did blood tests, put me on synthroid without exploring any less addictive options, still doesn't entirely help" thing.

In this edition, I am going to continue reviewing the adventures that followed that experience.

I began taking the synthroid (starting with less than 50mcg, then moving up to 75mcg, then 88mcg, where I am now) at the very end of February. In addition, I also started taking potassium chloride, vitamin D, and a big, fat multivitamin.

On Feb. 28th, I had to travel to Seattle for a week long summit. So I'd been taking the meds and supplements for only a few days before finding myself at a conference surrounded by strangers.

It was about three days into the conference when I realized I was feeling weird. I couldn't concentrate on anything, I was dazed, the slightest thing confused me. I was acting drunk (which, given I don't drink, is not funny).

Turns out that that is what high doses of Potassium Chloride do to you, just before they kill ya.

I almost didn't make it home because I got disoriented and confused at the airport. I became almost delirious on the last leg home, arguing with the stewardess about the duration of the flight (which was about forty minutes, but I was convinced, for some irrational reason, that it was three hours and couldn't figure out why they wouldn't give me water).

When I got home I realized that something wasn't right. The next morning, after displaying more neurologic issues, I looked online for side effects of synthroid, then vitamin d, then, finally, potassium chloride. Ta da, that was it.

I then called into the nurse for confirmation, which they waited too long to give me. Then in my next blood tests it showed that I had pretty bad hyperkalemia (high potassium). No duh.

Meanwhile, I was prepping for and doing presentations all over the US. Travelling to Tucson, DC, Los Angelos, London (England, okay, one trip outside the US), Baltimore, Columbus, and more. Every month involved travel, so there wasn't much time to focus on doctors appts, and health.

During all this, I did notice that the synthroid was helping me tolerate the ups and downs of travel better. I was getting more restful sleep (although not entirely refreshing). The vitamin D was really helping with the chronic pain, weakness, and stiffness.

But it did not fix two of my main concerns: food allergies and pain/fatigue episodes. Yes, the episodes did seem easier to recover from, but it didn't stop them, which was the whole point.

So, I started doing the rounds among all the specialists the endocrinologist had suggested.

First,
- The Neurologist: said, with his hands behind his head, already dismissing me before I sat down, that all I had was migraines. He gave me some samples of some beta blockers. Then he asked, yelling down the hall as I was leaving, if I had heart problems. When I said "yes," he told me to nevermind on the beta blockers, as they were contraindicated for people with heart issues.

Then, he just went back to his room and closed the door. Not suggesting anything else to help instead.

I have been tested for migraines twice in the last decade. Both times I turned out to be negative for more than average headaches.

and on to:

-Rheumatologist: Saw me for five minutes or less. Sat down and said "I already know what is wrong with you. I have a diagnosis. Don't you feel better already, knowing what you have?" He then pinched me in four places and announced that I had Fibromyalgia. He then commented that, "I'm surprised you didn't figure that out yourself on the internet."

He didn't seem to realize that I'd been tested for FM previously, thoroughly. After a thorough check up, it turned out that I didn't have all the symptoms necessary to have that disorder.

When I thanked him for his time, and asked him what kind of treatment does FM require, he told me that there is no treatment. That FM can't be cured, only lived with. There was a brochure the nurse could give me on my way out. Have a good day...

That inspired me to find someone to dispute his claim, because I knew that if that diagnosis stayed on my record no other doctor would bother with me.

I posted on Facebook about it, and a friend of a friend pinged me, saying that I should check out the Fibromyalgia and pain clinics (there was one on my area). They could conclusively prove I don't have FM.

So I called the local area FM clinic and made an appt, which I had to pay for out of pocket (my empty, empty pocket).

When I met the doctor, I told her that what I wanted was to prove I didn't have FM. Something, I'm sure, she wasn't expecting.

She did a thorough exam (thank god), and told me I didn't have FM. However, I did very likely have chronic fatigue. The CDC has a test for it, which I, unfortunately, scored high on.

She then suggested I get a metric shitload of blood tests (52 in all) and come back to her for treatment.

She said that with those tests she could determine what was really wrong with me, what the underlying cause of my pain and fatigue was-- and cure it. I was stunned. I'd been told that FM, CFS, and those sorts of things can't be cured.

She laughed and said that that was what most doctors said. But, usually, when a person shows up with what amounts to chronic flu symptoms, chances are that they are actually harboring at least one, usually several, chronic infections. Any one of which gives you flu symptoms. So, if those infections are found and treated, and the body supported after that so it can fully recover, often people essentially "get over it". They may always be suspectible to relapse if they're not careful, because they were vulnerable enough to get into trouble the first time. But with care, the person can recover and stay that way.

As for the allergies? Well, they can be caused by infections and imbalances in the intestines. If your intestines, where you absorb your food, are messed up, they cause your body to react incorrectly to food and other substances. This seemed kind of far fetched to me, but I remember being able to eat anything for most of my life, until I started taking antibiotics. And besides, most of my problems are food related. So it was possible.

I was psyched. That made sense to me.

Then, her office manager came into the exam room and told me that that would be $100 for that visit, $500 to $300 for all subsequent visits, and about $188 per treatment (possibly more), for about 18 months. Oh, and they don't take any insurance.

And on that note, I moved on. Don't get me wrong, I was curious to see if she was right, so I got the blood tests done (30 vials of blood), but I was going to have to find treatment I could afford.

Oh, how wrong I was...

Anyway, I moved on to the next specialist on the list:

-Nutritionist/Gastroenterologist: I waited three months to see this guy. He listened patiently to my whole story, then told me that I had food anxiety. That I had been misdiagnosed by everyone before seeing him (and I can't say he's entirely wrong, but what arrogance is that?!), that they had taught me to fear food. That I just had to ignore all my symptoms and start eating the diet he gave me. Totally ignoring my known and proven gluten allergy-- wheat, rye, and corn were high on his list of good foods. He didn't seem to care when I told him that would make me sick. He said that that was likely to happen, but do it anyway. "Eventually, you will be able to eat everything on the list. You'll be fine."

Sigh.

To refute him, I went to a different nutritionist, only this time at a holistic health center.

That guy, although he was really a slimy, car salesman kind of guy was so much closer to right. He did not dismiss any of my symptoms or allergies. And he immediately said the same damn thing that fibromyalgia lady did. However, his treatments were herbal and cheaper.

So I bought the herbs, they were pretty cheap, and brought them home. Then I looked each one up online and discovered that they were probably not going to be strong enough to truly cure what's wrong.

That led me back to the fibro' lady. She was a real MD, not a chiropractor, she could prescribe real meds. She had commented that trying to kill really deep seated infections was a bitch, needed really strong drugs, and might require several different protocols to really work. That car salesman implied that a box or two of herbals would put me right as rain, no blood tests to speak of, see me in three weeks.

I had about twenty pages of blood tests results by this time (from those 52 blood tests she'd requested), and had made just enough money to cover the return doctor visit ($500). So I made a return appointment.

I figured this:

The endocrinologist didn't care about anything but the thyroid, and could only test for and prescribe synthroid.

All other specialists, admittedly most of which she'd suggested, didn't care, thought it was in my head, or felt it was an untreatable disorder. They didn't want to actually hear me and cure me. My real problems had been utterly disregarded.

If I wanted to get to the bottom of my problems, I needed some who would schedule 52 blood tests on first meeting. Who really cared about my recovering from what was ailing me, not just about diagnosing me, taking my money, and getting me out the door.

So that meant my only option was the uber expensive, put me in bankruptcy, fibro' lady.

I mean, it couldn't hurt just to listen to her take on the results, right? I had already gone over them, line by line, online, and some, frankly scared me. There were some things I wanted to know.

So I went to the appointment with an open mind. I just wanted to hear what she had to say. Maybe my blood tests would show she couldn't help me. Or maybe there would be a more inexpensive way to do it.

To start, let me say that that doctor is amazingly thorough and patient. She is definitely worth $500. I just wish that my insurance, which I am already paying for, covered it, even a little.

She went line by line over each page of the blood tests, writing notes in the margins and telling me what every single one meant, particularly in relation to each other. The results were out of order like crazy, and she had to keep going back and forth through the pages, but still, she did every single one.

The results were kind of traumatizing.

I had hoped, having looked at them myself, that there were a few things wrong that I could see, but a lot of things were in the okay range.

But what actually happened, is some of the numbers I was worried or confused about were actually not an issue. Yes, my iron is high, but not super bad, and mostly because of the steak I eat every day. A few numbers were off, but the test had "hemolyzed" rendering those numbers irrelevant (and she too doesn't know why they're even there then).

And some of the numbers were much worse than I thought.
-My white blood cells are down a little, some of my IGG counts are low too.
-My DHEA is a little low, my Pregnenolone is so low I should be a ninety year old woman. (those two indicate that my Adrenal gland is broken, but I keep showing high, seriously high, cortisol for my blood tests) Those two account for a lot of my lack of endurance, strength, concentration, etc.
-Additionally, although my TSH numbers were improving, my T4 was perfect yet I still felt like crap. That's because my T3 was actually low and my reverse T3 was through the roof.

(TSH is the hormone the pituitary produces when the thyroid isn't working, higher is bad. T4 is the hormone the thyroid is supposed to produce --well there are actually three more, but endo's ignore that. Synthroid is synthetic T4. Your body is supposed to create T3 from T4 when it needs it. T4 is inactive, T3 is active).

But if I had good T4, why was my T3 not good? Because a lot of the T4 was being used for reverse T3 instead. So trusting my body to use the synthroid to make the right kind of T3 was obviously not working.

And that was just my hormone panel. The worst was yet to come.

The fibro' lady had been convinced that I had some chronic infections going on in my body from years of exposure in daycares and training centers. I figured I'd have, maybe, a few numbers a little above normal. I was afraid she'd brush them off as being on the fence and not treat me for them.

Boy was I wrong. According to the blood tests (which, mind you, at this point were several months old), I have a few infections, the worst of which is epstein-barr.

Yup, mono.

When you test for a virus in your body, they do a "one to ten" thing. So it shows up as 1:10, where there's ten antibodies in one measure. That means there are some antibodies, but they're not on alert, they're just patrolling. You had the infection in the past, and made antibodies for it, but you don't have it right now.

Some tests use a different max variable, but if you have 1:160, then you are probably suffering from an ongoing infection. Basically, 1:80 is highish but acceptable for just patrolling antibodies. Twice that is considered an active infection.

My epstein-barr numbers? 1:2560.

Yes, two thousand, five hundred, and sixty to one. Eight times the acceptable number of antibodies to show a previous, but inactive infection.

Oh, I've got mono alright... but there's more.

I also have Mycoplasma pneumoniae (igg is supposed to be at .09 or less, mine's 3.68), and an intestinal (and systemic) fungal infection. I apparently got that from all the antibiotics I'd taken in the past. Almost three times the acceptable limit in my digestive system, and almost twice as much simply in my blood system.

Keep in mind that if you have an imbalance of bacteria alone in your intestines (dysbiosis), you can get food sensitivies and other issues. And I've seriously got that.

And if you've got an imbalance that leans towards those pesky funguses (like candida, which is super common), you cannot eat sugars, starches, or anything that the fungus likes to eat, or you'll get sick. Huh, that sounds like me. It'll also make you crave those foods if you try to stop eating them. Sounds like me too. Mind you, I've been on a no/low carb diet for over five years, specifically because of those symptoms. No one else had ever told me why...

Oh, and quick tip, yogurt isn't really entirely effective in reintroducing bacteria to your body. Yeah. It seems I should've done more... to bad not one single doctor mentioned that. Even though I am living with the proof.

So it turns out that:

-- my symptoms are not in my head
-- my recurring bouts of flu symptoms; pain and fatigue had a definite cause
-- my increasing sensitivities to food have a possible cause (we'll see once I'm clear)
-- my incredibly limited diet was caused by something that can be cured, and not in my head (and not to be stopped or messed with til I'm cured)

The next steps?

Well, that's a good question. Keep in mind that I am broke. That I've not been really working this year because all my free time is taken up with largely useless doctor visits.

In order to be able to see this doctor and get my infections treated, I will have to work. But I can't work while I am dealing with infection die off and the side effects of the drugs to kill them.

But I have to work to pay for it, but I can't work if I get it, but...

So you can see my dilemma.

But, as luck would have it, I was just asked to co-author some new courseware. I would make about double what the treatment would cost (which would also almost cover the cost of the equipment upgrades I need to do the project, plus the treatment).

So, I accepted the gig. Yes, I am taking a risk. But what else can I do? I may not be entirely ready or able, when the time comes, to do the work, but I am going to have to buck up and do it anyway. Life's hard.

With that option covered (if the bid goes through), I have decided to try to do as much of the fibro lady's treatment as I can.

The treatment prescribed to me was:

I need to increase my DHEA/prenenolone, and get rid of my viral, intestinal, and bacterial infections (but I can't do all three at once, it could damage my kidneys and liver... that means I have to wait and do one at a time). Work on my T3 numbers. See if clearing my body of infection will raise my white blood cell counts. Improve my energy and sleep (since I can't heal without sleep).

To that end:

-Continue with the multivitamin, vitamin D, and synthroid for now. However, the doctor wants me off the synthroid, since it's not really working.
- supplement the synthroid with a synthetic, compounded T3 (an extra 40$ a month right there). Eventually increase T3 and go off synthroid
-take three months of Diflucan for the intestinal infection.
- take some ribose to boost my cell energy (commonly taxed from chronic infection)
- take probiotics (real ones) to replenish my intestines
- get another cortisol test done.
- start on the T3 replacement therapy, as soon as the shipment gets here.

Go back to the doctor in a month.

If all goes well I can start the oral and IV medication for the epstein-barr, and the IV meds for the mycoplasma pneumoniae. She'll also test my T3 numbers again to see if the replacement is working.

And now you're caught up with what I'm doing. (oh, I was just asked to write the next edition of my book, so that's good too)

Ahhh, the irony. Catching up on the health thing again (part 1)

So it's been about six months since my last post and so many things have changed that I don't know where to begin.

On January 1st I won a special technology award that is only valid for one year. It kind of obligated me to do a lot of travelling, speaking, and other community things related to my area of expertise. In February, I finally found someone who took my feeling ill seriously and prescribed for me a bunch of blood tests to discover what was wrong.

And found a number of things.

But only treated one, considering me "cured" when that one thing was better (which is still isn't).

I was a bit confounded. On one hand, this person was the first and only one who bothered to respect me enough to assume I was sick when I said I was, and tried to find the cause. But on the other, she only focused on her one, favorite blood test to diagnose me, and then prescribed only one kind of drug, in the face of many options, to treat it (I think I mentioned that in the previous post, but it's so important it deserves mentioning again). Even if that drug was wrong for me, she would consider no other, or any other of the common blood tests to get more details.

One blood test, one organ, one drug. Period.

The other eighteen blood tests? Well, she does those to keep from being sued. You see, from time to time, some of her patients turn out to have something else seriously wrong with them that the one organ, one disorder she likes. So to avoid being sued, she just does the same large group of tests in case any new patients turn out to have gout, hirsutism, cancer, vitamin deficiencies, or kidney/liver disorders. In the same vein, despite her conviction that my only problem was my thyroid (which is in the neck of a human), she scheduled me for a ultrasound of my reproductive system because the women in the exam room next to mine had turned out to have ovarian cancer, and well, now she'd rather be safe than sorry.

(No, I don't have anything wrong with my underworked reproductive system, thank you.)

Despite the suspicious nature of her obsession with the synthroid and the organ it replaces, she did have a point. The only blood test that she focused on, TSH (thyroid stimulation hormone, produced by the pituitary, indicates the thyroid isn't working), was way, way off. It needs to be between 1 and 2. Mine was 10.36, indicating clinical hypothyroidism.

One of the biggest reasons why the thyroid might be having problems is adrenal insufficiency. Another biggy is a lack of adequate iodine.

Did she test for those?

No.

Why? She wasn't interested in curing the problem. That would put her out of business. Instead, she wanted me to take a drug, which once I start on it I have to keep taking for the rest of my life, that only replaces the inactive hormone that the thyroid produces, T4.

But, I was desperate. I felt really sick, I had travelling and performance to do, and she was a doctor. I didn't have time to find a second opinion. Lots of people I knew were on synthroid. But I didn't feel it was right for me. I thought maybe there was something else wrong, maybe I just needed more iodine, or less.

But I ran out of time. My insurance said that I'd gone to a doctor, I'd gotten blood tests, now I had to follow their advice....

... so at the end of February, at the expense of my own opinion, I gave in and started taking synthroid.

I started slower and at a lower dose than the endocrinologist wanted. I didn't discuss it with her, I couldn't. She wouldn't hear it. I was going to take the does she wanted, period.

I was to learn the hard way to ignore people like that. They don't know you and don't care. If it's wrong for you, that's actually not their problem. They get paid, even if you die.

Let me say that again-- they get paid even if you die. For some, that is incentive enough to do what they always do when people have X, Y, or Z. It doesn't matter if anything about you is different and contraindicated for that treatment. They do what they do, no changes, no give backs. You went to their office, no you do their dance little monkey.

That is why I had grave misgivings when I started the meds, and why I did it at half dose.

I had some side effects, and it didn't seem to help me in any way. Then after a few weeks, I went for two thirds. I noticed sweating, heat intolerance, trembling, increased fatigue. I called in and they just poo-poohed my complaints.

I found that if I modified how I was taking my BC (which I have found has accidentally saved me from getting the estrogen related cancers and fibroids that four out of five women in my family get-- three out of those four die of the cancer as a matter of fact), the sweats went away. I had to change that on a permanent basis-- probably a sign that something wasn't right.

Over the next several weeks, that dose was okay. Then, eventually I went for the full dose. I felt weird about it, like I was addicting myself to heroin.

I went back in to see the endo' and my TSH numbers were still high-- even though I was feeling better. So she increased me; first 1/4 more, then finally a fourth more than that.

At that final dose, I found myself not feeling better-- but gaining weight fast. I bloated up and now can't fit into any of my clothes. It sucks. My arms and legs are still skinny, but my face, neck, and abdomen are bloated up and getting a little pudgy. Not good.

And when I mention it to the endo? She tells me to live with it.

And the bouts of pain? The increased sensitivities to food, chemicals, sunlights, dust, mold, pollen, etc.? The fact that I am now having allergic reactions to shampoos, soap, conditioners that have never bothered me before? That I am starting to get rashes that don't go away for months? The fatigue and feeling like I have the flu?

Not related, in her opinion, therefore something that I have to live with, or at least not bother her with it. Seriously, as far as she's concerned it's a different specialist's problem.

So let's see:

-- recurring bouts of severe pain and stiffness
-- severe gluten intolerance/reactive hypoglycemia
-- really restricted diet due to allergies/sensitivities to: wheat, corn, yellow#5, artificial flavors, preservatives, nitrates, sulfates, MSG, and a host of other things-- not to mention allergies to latex, coconut, tin, nickel, bounce, tide, febreeze, most perfumes, perfumed soaps, shampoos, moisturizers...
-- sensitivity to air conditioning, central heating, mold, mildew, funguses, and dust. Serious, serious problems with dust.
-- recurring bouts of severe fatigue. Combined with the pain it feels just like a really bad flu
-- with the fatigue is bouts of non-restful sleep. Afer ten hours, I feel like I pulled an all nighter
--recurring pneumonia, happens everytime I get a cold or sinus infection. Often, just when I miss even an hour of sleep, will start to get a sore throat, sinus pain, itchy lungs.

What did the synthroid help?

-- a lot of the fatigue is gone
-- I can recover from fatigue and pain faster
-- I sleep a little better
-- I can definitely handle cold temperatures better. My fingernails turn less blue in air conditioning

During my initial experience with synthroid, I was also diagnosed with hypokalemia (low potassium) and really low vitamin D. That could attribute to my heart arrhythmia, fatigue, weakness, pain, and light sensitivity.

Given that, I started taking a good, for seniors, multivitamin and vitamin D. The endo also prescribed me potassium chloride-- which was contraindicated for someone with potential adrenal problems or underlying autoimmune issues. But I didn't know that at the time.

The vitamin D, which she dosed way, way too low, really helped from the start (after I raised the dose from 400 to 4000iu).

The potassium chloride? Almost killed me. And when I called it in from the airport, the nurse didn't get back to me for more than a day-- to tell me to stop taking it.

(turns out that high doses of potassium chloride is used to kill inmates on death row-- who knew?)

Idiots.

The next week, when I did the standard blood tests before a revisit with that endo, it showed I now had bad hyperkalemia. Too much potassium. The potassium chloride form of supplementation was way too strong.

And like a robot, without wonder why I could be too low one week and way too high the next, the endo just told me to stop taking potassium altogether. As if there hadn't been something underlying that was causing the original depletion. As if the previous months had not happened.

No alternative means of keeping my potassium up was suggested. Go team.

So that catches you up to what drugs I've been doing up to this week, what's been going on, and where I am healthwise.

Stay tuned for part two-- where I discuss all the specialists I needed to see, what I learned about referrals, what I learned about getting second opinions, why health insurance sucks, and more...