It's been so long I forgot this was here... to catch up

A lot has happened since last this blog was updated.

I am so much better I forget, sometimes, that I was ever sick.

Now it's more about maintenance and recovery than being ill.

Things I've learned--

I probably have celiac disease, but I couldn't afford the biopsy (not covered by insurance), and I'd have to go back on gluten for the month preceeding the biopsy, which I am not willing to do. But I have every single symptom, including malnourishment, that a celiac sufferer would. My doctors are convinced.

I am also allergic to corn, and eliminating it from my diet (very, very hard to do), has made a big difference.

I am definitely allergic to my house, especially the central air system. Thanks to the badly sealed duct work, the central air has been pulling mold from the basement throughout the house, depositing it in the walls. In the basement, just below a grate in the ductwork, is the open sewer drain, where raw sewage regularly backs up. That too (well, the smell) is drawn throughout the house, especially in the winter. I have become terribly sensitive to sewage gases that I get sick anywhere I have to go where it is present, such as other peoples' basements, unfortunate hotel rooms (you can imagine the story there), and foreign lands where sanitation might not be a priority.

When I have traveled outside the US, I almost immediately stop having the allergic symptoms I have in the US. I am especially productive in Sweden. I feel as healthy as I did in my early college days.

My intestines have greatly improved. I am no longer malnourished. I can make my own B vitamins now, either absorbing the ones that can be absorbed, and creating the others in my intestines. My liver is apparently picking back up its responsibility of breaking down B vitamins into their necessary components, which is great. Those methylated versions of B vitamins were expensive. I no longer need to take extra selenium either. I do, however, take 10,000 UI vitamin D though.

And I am beginning to cut down on the betaine HCl at each meal. Another money savings.

I am also doing far, far less sodium than I once was. Needing it only when my immune system is irritated by something, or when I am coming down with something contagious.

I still have hypothyroidism and underactive adrenals, but I am improving. I cannot go without my T3 and Cortisol, but I have gone to Europe every year for the last four years, and managed to handle jet lag better and better with each passing year. This year has been great.

I am  now focusing more on getting stronger. I walk several miles a day, more or less, intentionally doing as many hills as I can.

I am starting to look forward to things, which I had long ago stopped doing.

About two years ago I started looking for a new house, since I discovered the one I'm in now is causing many of my issues. It took a lot of effort, something I never could have managed when I was ill, and a lot of time, but I have finally found a place. It has a lot of issues, one of which is mold, but at least I can actually fix them, rather than just deal with them because the landlord would not fix them.

I am looking forward to hardwood floors and radiant heat, no plush carpets or central air. I just have to replace all of the electrical system, repair most of the plumbing, replace and repair the heating system, repair a leaking roof, replace the kitchen, repair termite damage, and a few other odds and ends, and I'll have a home to live in.

I am quite looking forward to it.

Thanks for reading.

Wow, it's been forever...

Well, it's been a busy year.

Sadly, I've only been doing one thing the whole year. It's been an education in frustration, disappointment, betrayal, and despair. But at least I've learned something.

Meanwhile, my health has been changing, almost unnoticed amid the stress and sadness.

So last I was here, I was experimenting with acetyl-l-carnitine, and had been treated for a long standing, hard to kill, fungal infection in my intestines.

I was being treated at a clinic that specializes in fibromyalgia and chronic fatigue.

Well, that clinic changed their billing process, with the end result of me having to stop being treated by them.

That meant that, after I ran through the prescriptions they'd given me for T3 and cortisol, I was going to be SOL. When I asked them what they could do, I mean, they simply dropped me in the middle of treatment, how was I going to remain on the, according to them, life saving meds they had me on? They essentially shrugged their shoulders and told me I'd have to figure something out- that it wasn't their problem.

Proving to me that they honestly were just in it for the money. And it made me doubt their treatments, if they thought it no big deal to drop me with nowhere else to go.

Be that as it may, I did still have two months of prescriptions left at the compounding pharmacy. So I called them, told them about my situation-- and lo and behold, they had a master nurse practitioner on staff who could dispense my prescription meds. She would need to have me do some blood and saliva tests, and fill out about fifteen pages of paperwork, so she could be sure of why and how she should treat me.

I purchased and did the tests.

And boy, am I glad I did. All this time I had really wanted to know for sure what was going on with my cortisol levels (the fibro doctor sort of guessed, but seemed reluctant to really schedule the tests necessary to know). But this nurse practitioner flat out, as a matter of course, ordered the tests. So I got a chance to see on paper my real cortisol levels through the day.

And guess what? I am basically flat-line on cortisol, except for a strange rise and fall pretty late at night (which is odd, but apparently not unheard of for exhausted folk). This, combined with the blood tests for many of the hormones created by the adrenal glands proves what I had always known-- I have Adrenal Exhaustion. Not a little insufficient, not a little fatigue, exhausted. This condition, if it gets worse, turns into failure-- which is called Addison's Disease, and can be life threatening, or at least debilitating.

So what can be done about it? Well, a careful sodium balance is critical because of the lack of aldosterone. I also have to protect my eyes because they don't block light as they should (aldosterone again). Body temperature is an issue because, as often is the case, hypothyroidism is also a problem for me. My body needs huge amounts of amino acids, both because the adrenals use them to create hormones, and because my mitochondria are suffering, due to the adrenal/thyroid problems.

In addition, the adrenal glands require extra vitamins that adrenal exhaustion/hypothyroidism cause to be too low for some reason (there are theories, but the bottom line is I need extra).

Also, possibly unique to my situation, but I doubt it, I have some serious malnourishment issues. Basically my digestive system doesn't work (I don't know how long that's been happening, or exactly how bad because I don't have time to look into it right now).

This means that I need to take large doses of hydrochloric acid, digestive enzymes, and probably ox bile (I haven't gotten those yet, but it is looking like that is something else I'm missing). This means my stomach isn't creating acid like it should, my intestines (and pancreas) are not creating enzymes, and my panceas, gallbladder, and liver are not creating the bile I need to digest food correctly.

I have found that taking large doses of hydrochloric acid for every meal has made the biggest difference in my overall well-being that may well eclipse the improvements made by taking T3 and Cortisol, which were life changing when I started them.

So now I am taking:

4000 UI vitamin D
650 MG acetyl-l-carnitine
500 mg l-lysine
Multivitamin (good quality)
Selenium
Chromium
activated B6 and B5 (turns out I can't process those on my own without it being preprocessed, makes a big difference)
1/2 Iodoral (iodine-- it doesn't seem to be making a difference, but it is rumored that I must increase my vitamin A to see the difference, so that might be a work in progress)
1000 mg esterized vitamin C
Co-Q 10
Omega-3
Magnesium (200mg AM, 200 PM)

Also I am still taking 50mg of T3 and 25mg of Cortisol daily (sometimes more cortisol if the day has been very stressful)

I also take at least 4 (sometimes 6) 650mg HCl with Pepsin capsules per meal, and 2 digestmore enzyme pills per meal. (doing without the enzymes is not a good thing) I will be starting the ox bile as soon as they arrive (they're being shipped).

I have noticed a significant increase in my endurance, strength, concentration, clear-headedness, emotional stability, tolerance to stress, physical recovery from severe stress, ability to keep myself warm as well as tolerance to cool temperatures, ability to tolerate bright light and indirect light better, less migraines, less blindspots, less pain and stiffness, ability to sleep normal hours (both time of day and duration- 8 hours is now fine for me, as opposed to 10, although I do still nap). I can also tolerate standing in one position, or typing for many more hours than I could before.

Although, strangely, it seems my TMJ symptoms are actually getting worse on this regime, rather than better. I don't know why.

In addition to the continued T3 and cortisol, I was prescribed two hormone creams to help my body cope with the adrenal exhaustion-- progesterone and dhea.

I've had bad, bad experiences with dhea and pregnenolone, so I was reluctant to do the dhea, and I must admit that I am using less than half of what was prescribed. But the progesterone was something I knew I needed a long time ago. So I was very happy to see the nurse prescribing it.

The progesterone is administered in a cream twice a day. It makes a big difference as well- increasing my energy levels, but not in a jittery way. The dhea just seems to make my eyelids sweat (gross I know, but seriously, that seems to be the only consistent difference it makes).

Despite the incredible, endless stress I am under due to the work I am currently doing (in the worst sort of environment; alone, completely isolated at my house, never seeing the people making my life hell, dealing with impossible deadlines, threats and bullying, managing people not quite qualified for what they are now doing that wasn't planned for initially, and responsible, in the end, for all things good and bad in the product, no matter what the others do or do not do)-- I am feeling better than I have in practically a decade.

As soon as this job is done (it should have been done in June to give you an idea of how long I've been waiting and how much this job is interrupting my life), I plan to start working out at a local gym, and going back to teaching. That should increase the quality of my life physically, mentally, spiritually, and financially.

So that's the update. Thanks for reading. : )

Just a little thing

As you all know, I'm trying to get over some health things that have been hounding me for more than a decade.

Over the years I've been to many doctors and tried many things.

As my health issues have coalesced into more clinical symptoms, they have given me a more clear idea of the root cause of my illness.

Subsequently, that makes it easier to treat (if, by that time, it is treatable).

To that end, I've been working with amino acids, various vitamins and supplements, salt, and even a little sugar (formerly anathema in my world).

The powder's been fine for me (yay). I was told by my fibro doctor that I should take at least 1000 mg a day if I can stand it.

While I was on Diflucan, I just couldn't take more than about 250mg without getting trembly and anxious. But, without Diflucan (damn that drug), not only can I take more alcar, but it often (along with Co-Q10) gets rid of those headaches I can get in the morning.

So that's the backstory-- on to the little thing.

I was told, because alcar can be stimulating, never to take it too close to bedtime because it could keep you awake.

But then I read on a blog somewhere that taking alcar at night let's your body create HGH and other good things while you sleep.

Well, I've got problems with HGH and other critical hormones because of adrenal fatigue/exhaustion, so I thought I'd try taking some alcar before bed.

The first night I took a full 1000mg about forty minutes before bed, slept all night, woke up early feeling completely rested.

The next night, same thing except I took it about two hours before bed, and it woke me up four hours after I went to sleep, I couldn't go back to sleep for hours, was exhausted the whole day.

Next night, cut the dose, took it about an hour before bed, woke up about six hours later, couldn't go back to sleep, again exhausted.

Finally, I think I've hit on the right approach, about 500mg, right before bed, and I sleep throughout the night, and wake up feeling better than I usually do in the morning.

So I am thinking that yes, alcar can disrupt sleep, and that probably yes, it helps the body do good things while you are sleeping. I think it's a matter of dosage and when you take it as to how much sleep it'll disrupt.

Is there anyone else out there taking acetyl-l-carnitine before bed? What are your experiences with it?

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.

Continuing adventures; Nizoral, Cortisol, and me

So it's been a while since I updated the blog.

Since that time:

1) Discovered that I can't take Acetyl-L-Carnitine (ALC) at any decent dose, because it dropped my blood sugar like a rock.
2) found a powdered version of ALC, so I can take a tiny dose a few times a day.

So far it has NOT cured my addiction to steak, but I'm still trying. I figure I need much larger doses, but I'm getting there.

3) begun to take decent doses of L-Lysine as well. I didn't know whether that was working, until this weekend. This weekend, in Flu season, I went to Cleveland to do a public event. I didn't sleep well the night before, then had to drive in the dark, in stressful conditions (darned google maps), in a hurry because I was going to be late, went to a dinner that lasted too long, to go to bed too late, to be unable to sleep, to get up too early, to not eat enough for breakfast, to teach sessions that didn't go as planned, to have to eat late, skipping some meds, then late dinner, and later to bed.... and also didn't take my lysine either the day before or the day of the event. And that night I got the biggest fever blister on my lip, evah. It could have been caused by the stress on my immune system, eating something I'm allergic to, sunlight (drove into the sun on the way home), or whatever. Regardless, blisters that I thought I was done with came back as soon as I stopped taking the Lysine.

Lesson learned. Today I doubled my dose, but I think it's too late. The damage is done. We'll see.

4) Went to see the fibro doctor since the last post. She agreed that the Diflucan didn't sound like it was working. She didn't know that Berberine worked synergistically with Diflucan (figures I had to teach her that), and agreed that the 2 berberine tablets that I was taking with Diflucan were good, but that the Diflucan probably were not quite effective. She said that I could change to a different drug, or up the dose. She wasn't keen on upping the dose because of possible liver issues, and she felt that it was possible that my infection might be Diflucan resistant.

Also, she felt that my adrenals weren't entirely up to snuff. However, my blood tests seemed to indicate that I practically at the point of Cushings (caused by the over production of cortisol from your adrenal glands), even though I had none of the physical symptoms of Cushings (no moon face, no hump on back, etc.), and showed every other sign of having adrenal fatigue and too little Cortisol.

She felt that I might be overproducing Cortisol in the morning, then sputtering out and not producing enough throughout the day. That it was possible that I truly needed more Cortisol, and that it would help with my energy issues. Further, you should never really treat the thyroid without also being sure the adrenals are okay.

--So, now I am on 20mg of Cortisol (once for breakfast, once for lunch), and she upped my T3 to 50mcg (25mcg in the AM, 25mcg around dinner).

--And she changed my antifungals to Nizoral, 200mg (supposedly for breakfast).

On the first day, I took the T3 around 7am, by 8:30a felt a little heart poundy. Then took Cortisol for breakfast, and a Nizoral-- and had the worst migraine. It lasted all day. Then I took the second Cortisol, no change whatsoever. The T3 around 7p made me feel slightly less fatigued, but otherwise no change.

I felt horrible; disconnected, exhausted, weak and shaky, light sensitive, terrible headache. Bad. So I did a lot of research on Cortisol and Nizoral.

-- If you have too much Cortisol you can get bad headaches, muscle weakness (even muscle loss eventually). That is what I felt that first day, so I am figuring that AM Cortisol is bad.

--But (and this was a surprise to me, why would a doctor prescribe something like this to a hypoadrenal patient?), Nizoral is used to treat Cushings by suppressing the Adrenal Glands and blocking the production of Cortisol.

Keep in mind though, that first day, there wasn't enough in my blood to help counteract the first Cortisol dose.

Worried, and not having time to play-- this is what I did:

- Kept the thyroid meds, T3, just as they were. They seemed fine.
- Stopped taking the morning Cortisol.
-Kept taking the afternoon Cortisol. It seemed that the afternoon one did seem to keep me going better in the afternoon. No afternoon nap required anymore. Yay!

and the biggy:
- Changed my Nizoral schedule to taking it at night. It seemed to take about nine to eleven hours to completely clear the Nizoral side effects, so I figured if I took it at dinner (must have food), that would give me about three hours before bed, then eight hours in bed. That would give me eleven hours to clear.

Further, I read that your body produced Cortisol in a diurnal pattern. In the morning it produces a lot, to get you up and ready for the day. Then it increases again in the afternoon to give you a boost at the end of the day. Then, at night it stops altogether, so you can sleep. So if I take a Nizoral at night, and is suppresses my adrenals, it's okay. They're off anyway.

And it WORKS. I feel pretty darn good. I have energy, I don't need so many naps, and even my stomach doesn't hurt that much.

Another unexpected bonus-- my hypoglycemia seems less extreme. Cortisol helps keep your blood sugars up and even, and apparently the Diflucan was really making my hypoglycemia much worse (who knew?). I am optimistic that I might be able to tolerate higher doses of ACL, Co-Q10, etc., soon.

Now, I may have stressed my immune system, which is why I've got the lip thing going on, but at least I can easily take the Nizoral (which has some nasty side effects) without too much trouble.

My current regime:

-T3, early AM (then usually back to bed)
-Maitake, one to two pills, just before breakfast
Breakfast
-vitamin D/Multivitamin (DHEA every other day-- too much estrogen if you don't, bad lesson there)
-two tablets Berberine
- Between Breakfast and Lunch- L-Lysine
Lunch (around 3pm)
-Cortisol
(sometimes an Adrenal Stress vitamin C formula)
-2 berberine
Dinner
-Nizoral

In between, whenever I need it I also eat heaping teaspoons of Coconut Oil, about five drops of Oil of Oregano at a time (sublingual, and expensive), and use tea tree oil for my sinuses (it opens them up and is supposed to be antibacterial, antifungal, and even a little antiviral).

So far, it seems to be working. I have been around people coming down with or getting over swine flu/normal flu/strep and haven't gotten it yet-- which gives me tentative hope.

I spent the last weekend out of town, and I am prepping to fly (eek) to another event this weekend that will be a test of my endurance- four hours of teaching (with a break for food). On my feet, talking non-stop. Here's hoping I'll be okay. : )

After that I have to prep for another four hour event in December, work on a new beta of the product I write about, then prep to write another 1100 page book. During that, I will also have to deal with IV antiviral treatments, hardcore antibiotic treatments, and probably another course of antifungals because of the antivirals before I'm done. Each of these courses has their own side effects and problems to deal with on top of trying to write a book.

Wish me luck. : ) I'll keep you posted.