Save My Life: an update
savemylyfe.blogspot.com
savemylyfe.blogspot.com
Best of luck to you, but until they find something definitively, mind your sanity. Don't get too excited and wrapped up in Celiac yet; it might be the wrong diagnosis. Each time you get a wrong diagnosis, you drop a little lower. Being invested in a particular diagnosis and then having it be disproven is more like a free-fall.
"In November 2002, American Association of Clinical Endocrinologists(AACE) published revised guidelines that provided a new range for normal thyroid function. Until this time, doctors had relied on a normal TSH level ranging from 0.5 to 5.0 to diagnose and treat patients with a thyroid disorder who tested outside the boundaries of that range. AACE encouraged doctors to consider treatment for patients who test outside the boundaries of a narrower margin based on a target TSH level of 0.3 to 3.04. AACE believes the new range will result in improved accuracy of diagnosis for millions of Americans who suffer from a mild thyroid disorder, but have gone untreated." http://www.aace.com/public/awareness/tam/2004/tsh.php
Most of your symptoms don't seem thyroid related, so it wouldn't surprise me if this is more of a down stream symptom from whatever else is going on with you.
Interestingly, the thyroid tests from July 2009 have a TSH of 0.12 and a fT4 of 1.7 -- savemylife, was your thyroxine dosage decreased after the July 2009 tests? If yes, you might want to get your endocrinologist to put you halfway between the two dosages.
I agree with greatreorx that this is almost certainly not the only thing going on, though -- but in keeping with Hickam's dictum ("Patients can have as many diseases as they damn well please") you shouldn't ignore the possible contribution of thyroid issues simply because they can't explain everything.
A lot of gluten-based products are also high in fiber, are they not? If this is the case, the lack of fiber in your diet might be the contributing factor to the reduced number of bathroom trips as of late.
Regardless, I hope this works out for you. Sounds like you're headed in the right direction!
PS: never, ever, thought I'd be discussing my bathroom habits on the Internet.
On the other hand, your WBC abnormalities are interesting. I still wonder if you've had an SPEP/UPEP, although your normal hematocrit is, to an extent, reassuring. Historically, how has your wound healing been?
* = Edit: Especially given that you have elevated IgA across the board, it's not all that surprising that you have an elevated anti-transglutaminase IgA.
And while I appreciate the follow-up to that great thread, I caution you to proceed carefully. Engaging a caring community of bright minds can be very cool, but please beware crossing that thin line into crowdsourcing your health care.
I sincerely hope you find the help you need, but dude, find a good health care practitioner. If you haven't yet, keep looking. We're not it.
In the end I rationalized my decision by thinking that if my post isn't actually appropriate, that it simply wouldn't get voted up. It's a community site, and in the end the community chose to vote it up. I think that's worth something, though I certainly do see your point.
I'd make one correction to your argument though- I'm trying to crowdsource a diagnosis, not my medical care. There is a big difference.
Its a very interesting case and I've enjoyed following it, so please keep updating us. And best of luck with your continued recovery!
Nothing can be more important that saving a life so your threads are not only appropriate, they are most welcome.
I don't know if I could be as brave as you are in your quest, but obviously you have been through quite a bit and I trust you know what you're doing.
I consider diagnosis to be a subset of health care, hence my concern. Take everything here with a grain of salt. I hope you find a trusted health care professional, and more importantly, good health. Best wishes.
It is indeed hard to know what to make of a lot of the suggestions I receive here, but the quality level of the comments is way above the kind of discussion you would get in most places by posting such a story ("have you tried crystals or magnets?") Already it has turned up something (Celiac) that apparently has been entirely overlooked by all of the doctors I have seen thus far. Even if that turns out to be a dead end, it's worth knowing about and investigating.
Keep in mind, too, though, you may not have one definitive diagnosis. You could have _______ and also ________, or ________ caused by ________, which then makes ________ worse. The body is a complicated thing.
And like edw519 said, the first post was much more interesting than the average HN post, so I say keep 'em coming.
I didn't interpret the update which said he had been to a doctor and had another appointment soon as him expecting us to have too large a role.
If there is one bias that intelligent, technologically oriented people suffer from, it's an over-confidence in medicine and an excessively mechanistic view of the human body. The body is more like an aquarium full of a variety of species than an engine in which a part may or may not function.
Having said that, no one modality is better than the other. Each one has its own place.
There is one more striking difference also between the Western and other modalities and You made it clear by using the word "fix".
For certain conditions, "fixing" does not work. If my arm is broken, sure you can fix it but for chronic conditions, certain lifestyle changes will have to be made and that requires the individual to be willing to undertake shifts in their behavior. For example, what you eat, when you eat, where you eat, how the food is cooked, when you sleep, the ambiance of your work, home and not to mention exercising etc.
So in that sense, the holistic medical practitioner becomes more like a guide and the individual takes on a active role.
For most people, this is too much to do. So they prefer Western Medicine where the mindset is, someone is going to "fix" me while I am busy with my life getting stressed up. The role is passive. Big difference.
It is funny that Western Medicine practitioners are called doctors whereas holistic practitioners use the term heal and are called healers. (The root of the word heal is related to whole)
Now that Western medicine has got most of the low-hanging fruit and is now banging its head on the hard problems, it may appear to fall short in the "what have you done for me lately?" sense. But that's just because we take it for granted that we aren't going to get polio or smallpox.
A lot of Western treatments for chronic conditions aren't that great, but is there anything that's been proven better? It's not exceptionally pleasant for people with sleep apnea to have to wear masks and have pressurized air blown into their breathing passages at night, but at least they get some real sleep. Living with diabetes still sucks, but wouldn't it suck more without the treatments scientific medicine has developed?
[1] "Western medicine" is really a bad name for it. My specific condition was first discovered by a Japanese doctor, hence the name Hashimoto's thyroiditis.
Of course, that's not going to accomplish anything if my immune system has decided to destroy my thyroid gland, or if a stray gamma ray or two has turned a lump of otherwise-useful tissue into a malignant tumor, or if my breathing passages are shaped in just the right way to obstruct my breathing at night.
Though I am not going to start another controversial thread (about homeopathy), I just wonder why the mainstream medical science does not looks at human malfunctioning as a whole system. In other words why there are so many organ/tissues/functions specialists?
May be (with main stream medical science) we are on wrong path and have made things so complicated that it has impossible to consider the whole human body in one shot in any particular disease. Though we fully know that analyzing/treating the parts in a complex system won't take us too far.
I'm only answering this part, because I also don't want to get involved in a homeopathy debate.
They do look at human malfunctioning as a whole system. The people who do this are called "internists". Your primary doctor is probably one of them.
The reason that there are so many specialists is that the human body is really complicated. As much as we would like it to be simple, there's just too much to know about it for any one person to know everything, even if all the information is available. For the same reason that mechanical engineers specialize in things like mechanism design, aerodynamics, or materials, doctors specialize in different areas of the body. An internist simply does not know enough to figure out everything that could possibly be going wrong with a person's body.
To my mind, the big problem is not with the specialization; it's with the coordination. All of the above specialties, and more, were involved in the design of any given vehicle you're likely to encounter, from a performance bicycle to the Concorde. Yet, it's really hard to get doctors from different specialties to collaborate to tackle a complicated disease. This is not a problem with medical science, so much as a problem with the way things are done right now.
Of course, for very common symptoms (like headache and nausea), they usually just treat the symptom.
I think you should clarify what you mean by homeopathy before arguing that it is superior. I suppose it's possible that someone administering homeopathic remedies may have a belief about the body as a whole, but I think it's a stretch to consider homeopathy an improvement on western medicine in any way.
The crowd will tell have him running around getting tested for everything from celiac to Grave's disease. When the tests turn up negative, the crowd will claim that the testing threshold is wrong, or that doctors just can't be trusted. He will be told to try everything from vitamin B12 shots, to allergy medication, eat more kale and bananas. Perhaps if someone recently read a weston price website he will be advised to eat pork chops and drink buttermilk. Maybe polyphasic sleep is the answer? Or maybe light therapy and a white noise generator? At least this is Hacker News so nobody is recommending cupping or leeches or magnetic wristbands... yet. Asking the internet is like a schizophrenic consulting with the voices in his head. Every fruitcake idea will be presented with equal weight.
With that said, my contribution to the noise is that if these symptoms have been there for 18 years and haven't killed him, it's probably psychological.
By that logic, any chronic disease is psychological.
There are a lot of very smart people here and I think it was a great idea to come here. If the OP is smart enough to not take everything said as a cure, they could very well gain some very valuable bit of knowledge that could lead them on the right path; just like starting with Wikipedia.
In fact, if the diagnosis differs from what the computer says, then this should always be reported. Failure to do so should be considered a criminal offense.
Penalties are certainly a mistake in the case of your statement, as you haven't really outlined any computerized diagnostic system that is accurate on the entire range of human maladies, is available to all, and that can account for all of the fuzziness of reporting symptoms (just to name a few obstacles).
But I can't see at all where you're coming from when you say criminal offense. This would suggest that doctors should be locked up?
Then you feed it all the symptoms, sometimes it asks questions, and gives you a list of causes sorted by probability.
It works almost exactly like this game http://www.guessthename.com/
Apparently the biggest problem with it is that doctors won't use it.
The second problem is feeding data - you basically have to parse every medical paper ever published.
Here's a patent: http://www.freepatentsonline.com/6607482.html
There are lots of a papers, and a small number of working prototypes, but I have not heard of any that are actually being used.
How to find an LLMD (Lyme Literate Medical Doctor)
Why did chronic Lyme become a grab bag? I don't know for sure - it did so before I entered medical school, and in medical school we actually don't waste too much time (or perhaps we spend too little) talking about quackery.
Rejecting the CDC's diagnostic criteria and creating their own -- and, conveniently, profiting from doing so -- makes me immediately hypervigilant around physicians who claim to treat "chronic Lyme." In fact, just today I listened to an hourlong talk today by Allen Steere at MGH about Lyme disease, and he very clearly laid out what Stage 3 Lyme disease looks like: basically, arthritis +/- neurological deficits.
"Chronic Lyme" is distinguished from Stage 3 Lyme disease by being a grabbag diagnosis without accepted, objective diagnostic criteria. Multiple randomized controlled trials have been attempted on patients with "chronic Lyme," and in none of these trials did treatment with antibiotics help. The disease that these people are suffering from is, no doubt, real, but it is not caused by chronic, persistent infection with Borrelia burgdoferi, and it is not helped by antibiotics.
So you have this guy here who said he was diagnosed with Lyme and was treated for a year and did not improve, and is now not answering questions about Lyme.
edit: I bet some doctor's (or the doctor that prescribed) told him that Lyme doesn't exist, or you couldn't have it after all those antibiotics... etc and that's why he's so excited about a Celiac diagnosis (or rather anything but Lyme), because it means he can sweep Lyme under the rug, exactly like the doctor. But it won't help him though, and the doctor who told him to forget about Lyme ultimately doesn't care because he's not the one with it. The edge of science is a fuzzy place, but some people are pushed right up to it!
Nobody is saying Lyme doesn't exist. Most doctors have diagnosed Lyme - there are over 30,000 reported cases annually. It's neither rare nor controversial. I am saying that Stage 3 Lyme has a specific set of symptoms that are inconsistent with what savemylife describes. Allen Steere is saying that "chronic Lyme" is not an infectious disease caused by borrelia.
Savemylife's Lyme diagnosis was done only biochemically, which is not consistent with the CDC diagnostic criteria for reasons I described above. He was then treated for a year - a risky proposition in itself - and was unhelped. Spirochetes are notoriously susceptible to antibiotics. If you only take one dose of doxy, you cure ~75% of all Lyme cases. It's that easy! After 2 weeks of doxy, the cure rate is nearly 100%. After a year, you are simply eradicating native gut flora. He does not have Lyme disease. He has a real problem; this is not it, and pushing him towards sexy, grabbag, but clearly incorrect diagnostic labels helps nobody.
There are several iPhone apps that tell you what has gluten in it (just be careful some of them aren't accurate); there are replacement flours that work just as well as real flour so you can bake bread, cookies, etc. They sell gluten-free pasta, gluten-free beer and your local Whole Foods should have a big gluten free section in it. Even the big-brand grocery stores are starting to have gluten free sections. You can also order a lot of stuff online.
The Celiac Disease Foundation ( http://celiac.org/ ) is also a great resource, you can call them up and talk to them - they are extremely knowledgeable and friendly. There's also local celiac support groups, if you want you can probably find one in your area.
Also, just a thing to know: a lot of restaurants will have foods that are gluten-free. But they prepare the food in the same place as the rest of the food that has gluten which leads to contamination and you end up getting gluten in your food.
p.s: (I'm really sorry if this sounds a tad tasteless, but - and I am not alone in this, it would appear - I have been following this with a little more interest than any of the other HN submissions, and remembered this being mentioned as a possibility, so...)
But just take note here that I am not a doctor - just a well read person interested in medical matters.
In my experience, it actually pulses over a period of time. Presumably as your villi get a coincidental chance to heal as you just happen to eat a couple of gluten-free meals accidentally (which I would used to do with salads, not all of which have croutons), then they get hit with a fresh load of gluten in the next meal. So the point here is that doubling your gluten load may merely move your villi from "effectively destroyed" to "effectively destroyed", that is, no real change at all.
(One downside of celiac is that while it is fairly treatable simply by avoiding gluten, you tend to get more sensitive over time, as if any does get through you've literally got a lot more to lose, and the fact that your small intestine is under attack is much more clear. I can literally feel it pulsing with inflammation-induced blood flow. I think maybe I used to be able to feel that sometimes but didn't realize that was Wrong(TM).)
The way to diagnose it is to stop eating it for a long period of time, then have a load about three weeks in. You'll know then, because your healed villi will have an epic hissy-fit as your immune system tears into them. Based on what I've read this seems likely to be more determinative than any other test, including the colonoscopy ones; broadly speaking I'm a defender of Western medicine and procedures but I'm not sure that there isn't a bit of "if it isn't a lab procedure it's not a real test" bias here; colonoscopy and biopsy does not seem to be very reliable but it is still used a lot. Even my father, who definitely has it and is how I realized what I had was only told that it was "indicative but not conclusive". Much like the poster here, in fact. Like I said, I trust medicine in general but I'm inclined to set the threshold a bit lower than they do here, especially given the ease of a followup diet test.
(If you're into medical stories on TV, I recommend some time with the Celiac page on wikipedia. It's a legitimately interesting disease; it's considered autoimmune, but it's unusual in that it's attacking the body for having a foreign protein. It's sort of an allergy, but differs in significant ways. It resists conventional classifications quite effectively.)
Although I have a relative with celiac, I am not sure how the reactions to different quantities of gluten work. (She's generally avoiding gluten, understandably.)
It could be that you have some sort of infection that is hard to identify or treat.
Chronic inflammation can cause a low white count - you have symptoms of inflammation and should have inflammatory markers checked such as CRP, homocysteine, and ESR. Even if it turns out that you have an untreatable infection, maybe avoiding inflammatory foods would help manage your symptoms.
Man, it says something about your situation when you're excited about Celiac.
The damage was so severe that a section of colon had to be removed.
Eat more apples, bananas, oranges and watermelons for calories, don't worry about the sugar, this is not sucrose. For minerals and other good stuff eat green leaves: lettuce, spinach, kale and cucumbers. This might seems contradicting the theory you're testing at the moment, it is full of fiber, so you might reject it, but please consider this perhaps after you have some conclusions with regards the Celiac.
There are some theories regarding cooked food that claim there is a strong immune reaction in the human body after eating a cooked meal, the body is exposed to massive amounts of deformed protein and each person may react differently. You will go back to several bowel movements a day eating many fruits and vegetables but that's a small price to pay for your health.
Feel free to ignore me. Good luck with your health!
Basically, the idea is that the body prefers a slightly alkaline pH (stay with me now). Rice, meat, cooked foods, coffee, black tea and smoking all acidify the blood, where as fresh vegetables and green tea de-acidify it. Acidified blood then leads to cancer, heart disease, and other chronic ills.
Ok, but the body naturally maintains blood pH in a narrow range. If this theory has any truth to it, then it wouldn't be "acidified blood" that's bad for you, but the energy and nutrients consumed, and the byproducts created and disposed of, in the course of maintaining proper pH against an acidifying diet. Low-pH urine might be a sign of the body working overtime to keep the blood neutral.
To this end, you can buy water ionizers that produce alkaline water, and drink that rather than normal water. According to the product literature I saw (my neighbors in China had one installed--a lot of money for a retired couple), the original research looked at villages around the world where people lived longer than their average countrymen. The common thread was slightly alkaline water (supposedly). I went online to check sources, and indeed, there was a lot of university-affiliated research along these lines in Japan.
This was 6 years ago. I'm sure you can find more information online, if you are curious.
I read a lot about raw food on the internet and tried it myself. I used to eat the SAD (Standard American Diet) even though I was born, grew up and still live in Israel.
4 years ago I switched to a vegan diet and a year and a half ago I started on a raw vegan diet.
The best diet for me personally is 811rv, this does not mean it is the right diet for everyone, but you should at least try it before dismissing it as rubbish. It is not a quick fix, it takes a lot of effort, mainly in the social pressure from close friends, family and the society in general. this idea is so alien that everyone will be against it. Think for yourself and research the subject. It can't hurt you to eat healthier, right?
An apple a day keeps the doctor away - its just not true! You need to make the apple the main course and eat many apples during the day.
Here are some pointers regarding nutrition:
nutridiary.com (free journal where you can log what you eat and it calculates the nutritional value of the food)
juicefeasting.com http://juicefeasting.com/JuiceFeastingSpectrumIntro/Whatisth...
I find it easy to accept that your diet works--especially that it works for you. Just the notion that it works for the reasons outlined, seems outlandish to me. (But I do not have enough information either way.)
Care to explain that? It sounds like a common misinterpretation of the "Sugar: The Bitter Truth" video that was floating around a while back. Most fruits have plenty of sucrose anyway.
[1]: http://en.wikipedia.org/wiki/Urine#pH [2]: http://en.wikipedia.org/wiki/Hyperuricosuria