Continuing adventures; breakthroughs, setbacks

Howdy all,

It's been a long time since I posted. Lots of things have happened.

To catch up:

I went off the antifungals. Started feeling great about a day or two later.

Figures.

Have had no bounce back, reinfection that I've noticed since.

I have noticed that I feel better, my skin is better, I do the entire digestion thing better (I'm not drawing a picture here, but suffice it to say, it was not completing the process properly).

Last we spoke (if I may use that term), I had been switched from diflucan to nizoral.

Well, the diflucan definitely was causing my intolerance to the acetyl-l-carnitine, as well as the increased hypoglycemia. It was also messing up my hormones.

At this point I've been off Nizoral for months. It does seem as if I am free of infection so far.

I was given a blood test since the last entry, and it turns out that my Thyroid med dose was twice what it should have been, giving me hyperthyroidism, instead of hypo.

I cut the dose in half-- will have to wait to see if that worked, but it feels like it.

I also am taking the cortisol once a day in the afternoon. It also seems to be helping.

But, on to the real stuff that I've learned and what will happen in the future.

In January I was renewed for an award that is given out yearly. It meant that I qualified to go to a special conference of award winners in February (bad time for event in Seattle, same week as Olympics).

Winter is the worst time for me. I am always at my sickest in the winter, and Feb. is the worst because I am completely worn out at that point.

But, I decided to to the conference anyway.

I also signed up to write another book. That turned out to be a bad, bad idea for a lot of reasons. Bottom line is I ended up working night and day for about two weeks before the event, leaving me exhausted and stressed when I left.

I got horribly, humiliatingly sick on the flight to the event, and basically never recovered while there. I was still sick two weeks after I got back.

At first I thought it was food poisoning. But now (to shorten the tale of woe considerably) it turns out that I probably had human Parvo b-19. That's slapped cheek syndrome or Fifth Disease, a childhood illness that is characterized by flu like symptoms and red, inflamed cheeks. By the time your checks are red, you are no longer contagious.

Like chicken pox, it is not good to get as an adult. It can cause platelet problems because it attacks the bone marrow.

Guess what my symptoms were while I was at the conference? Yup, parvo. And my blood count was bad after I got back. I didn't get to be tested for parvo yet, but it's unlikely I had anything else (unless it was lukemia).

Also, while there, I didn't realize that I had fallen back into the low carb diet I always used to use on the road. But now that I am eating carbs, that was a bad thing. I also wasn't eating enough salt.

All in all, rough experience.

It was after that, when I was home, that I discovered how to end my addiction to steak.

Yes, that's right folks. No more steak (unless I want some).

Up to this point, I had to eat steak (or the equivalent) every day. If I didn't, I'd get muscle pain, neck/shoulder/jaw pain, severe light sensitivity, pounding headaches, fatigue, bewildering brain fog with no short term memory, problems with my sense of smell, and a light side of nausea.

After going to doctor after doctor who all but laughed at me when I asked about it, I think I have the answer:

1) I needed amino acids. Particularly l-carnitine and lysine (but probably others as well).
2) And this is the kicker-- I needed SALT! Yes, what I was really craving was not the meat, but the salt on the meat. That's why it didn't work when I cooked it.
3) I needed the fat. Lots of fat. That's why lean hamburger doesn't cut it (especially if it's overcooked, which is how I prefer it), and chicken or fish are just styrofoam food to me in terms of satiation.

Now, why do I need these things?

Here's what I've found:

It's all about the adrenals. Not the thyroid, which mine have been diagnosed as clinically under-performing. No.

If your adrenals don't work, your thyroid will fail next because of the chronic overburden of trying to pick up the slack. Western medicine only really looks at and treats the thyroid-- which is why it often never gets better-- because it was the adrenals that failed first, and the adrenals that must be recovered first.

But, my adrenals seemed okay, even over producing. The fibro doctor felt that they still needed help (without more testing, just a hunch), and offered me low dose cortisol.

Well, was she right.

Here's the deal. My adrenals do over-produce cortisol in the morning, especially if I have to drive through rush hour traffic to get to the hospital for the blood draw. But that's really all the cortisol I get for the day. Meanwhile, all 49 of the other hormones that the organ should be producing are not being produced.

Of those hormones, aldosterone is used to regulate the body's sodium/potassium balance (among several other important things). If your body doesn't have enough aldosterone, you will have severe problems with low sodium, and a terrible intolerance to potassium.

(hello, that's me)

To compensate, you have to eat up to two teaspoons (ptewy) of kosher (nothing added) salt a day. I am good at about three fourths of a teaspoon right now.

(an interesting site I found about adrenal insufficiency: http://www.drkaslow.com/html/adrenal_insufficiency.html)

Now, the adrenal gland, especially when it is struggling to function, uses more fat and protein than practically any other organ to produce its hormones. No fat (particularly meat fat), no hormones.

And finally, along with the adrenal issue is often a mitochondrial issue. Because those amino acids in the protein that the adrenals are burning through, the mitochondria in every cell of the body, don't get any. That is really bad, because they can't generate energy without it.

So, what do I need?

Well, there's steak (rare to medium rare-- turns out well done steak loses aminos, figures).

Otherwise, I can now do chicken, fish, etc., as long as I drink at least one whey protein drink, high in amino acides, a day. In addition, need a lot of salt, 1/4th a teaspoon before or after each meal works for me. Come to find out I need a little sugar too to process the salt, so I now eat a little sugar or carbs with each meal-- without bloood sugar consequence (yay me).

I haven't gone out to eat since January. I have saved hundreds of dollars, and I feel pretty good.

I still have EBV, and there are days when it flares up, but overall, I'm better.

Oh, and now that I'm off Diflucan, I can do double the recommended dose of acetyl-l-carnitine without bad effect. I think it really helps me with fatigue, headaches, and even helps me get restful sleep.

So what have I learned?

1-- My chronic fatigue was being largely caused by an intestinal infection that was difficult to get over. I also still have high titers for EBV and pneumonia.
2-- The chronic infections (stress, and possibly genetic factors) caused my adrenals to fail or at least falter, which led to my thyroid giving out.
3-- That my adrenals failing and the intestinal infection caused me to be unable to metabolize carbs, putting me on a low carb diet, which further damaged my adrenals and thyroid.
3-- That I am now on DHEA/Pregnenolone, ACL, co-q10, more than 5000ui of vitamin D, omega 3, as well as 5mg of cortisol at least once a day, and 25mg of T3.
4-- That now that I am taking cortisol and infection free (in my intestines), I am now eating carbs. It is helping immensely.

Another interesting avenue I might check out-- stomach acid issues. I found an interesting web site about betaine HCl. A lot of my continued symptoms also point at my stomach not being acidic enough. I may pick up some betaine hcl next week and try it. I'll let you know how it goes.

(interesting site about stomach acids and betaine hcl: http://www.cocoonnutrition.org/catalog/page_betainehcl.php)

Also, something important. I learned that, while I was sick, I should have tripled my dose of cortisol, at least. That as soon as I started doing that (unfortunately, after I got home) is when I started to truly recover. I know that seems counter-intuitive, because cortisol suppresses the immune system, but it helps the body cope with stress, which is what I needed.

So, when you are losing sleep, under terrible stress, getting sick from a virus or infection (flu, pneumonia, etc)-- remember to increase your cortisol. It's like increasing your insulin after eating a lot of sugar.

In the future I need to get started on treating the EBV.

To that end I have purchased a one month supply of Famciclovir. That stuff is expensive!

In the US it's about $700 a bottle for one month. I found it in canada (mail order) for $300, but still. Ouch!

I am holding off on starting the anti-viral part of my treatment (I know, I shouldn't...) until I finish the hardest part of writing the book I'm doing. I just can't possibly keep up my deadlines and cope with what are likely to be the worst side effects I've had yet.

Thanks for reading. I hope what I've learned helps someone else. Remember, amino acids, protein foods, lots of salt, some fat (even butter helps), and some sugar. Don't ever let your doctor tell you that what your suffering with can't be fixed, or that you're not really sick. You know what is right for you. Don't give up.

More on my continued adventures later. Peace.