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. : )
Showing posts with label DHEA. Show all posts
Showing posts with label DHEA. Show all posts
Wednesday, October 13, 2010
Thursday, September 10, 2009
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...
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...
Saturday, September 05, 2009
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)
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)
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