Category Archives: diagnosis and testing

The summer of my frozen shoulder *

Adventures in Nutritional Therapy

In 2014 I stumbled on a staircase, reached out to balance myself against the wall, and was rewarded with a breathtaking pain in my left shoulder that I tried to ignore for a year. For all that time I was unable to raise my hands over my head to wash my hair, but because of the chronic exhaustion that colored my life for a good two decades, the idea of simply arranging a doctor’s appointment was overwhelming, never mind a series of physical therapy sessions.

By the summer of 2016 I had moved out of my moldy apartment and regained enough mental and physical stamina that I felt I could tackle the issue. I went to the local pride-of-the-town clinic — globally-recognized, POTUS-praised, and nicknamed “The Machine” by my acupuncturist — where a doctor explained that the offending muscle was either just tweaked, or actually torn like the meat on a piece of bacon separating from the fat, drying out, and shrivelling up. She also said that “the policy” was not to use an MRI to determine which type of injury was involved, because the treatment for both injuries would be the same, mostly stretching.

I found this disturbing. To keep such information from a patient seems shitty to me. I paid for the MRI myself in order to know what I was dealing with and to minimize the mental energy I’d have to expend on wondering how bad it is or will get. Luckily the muscle was not torn.

I was sent to a compassionate, patient and articulate physical therapist who ran me through exercises that revealed that the majority of the muscles were tight and needed stretching, but two in particular produced a different kind of pain and felt more wrong with each session.

After receiving a bill for $700 for just two of the sessions, I bailed on the PT and looked for a new acupuncturist, since my old one had left town. Such a search is usually pretty frustrating, especially when your state government has a history of changing certification laws every other year. I lucked out and found a good one ten minutes from me, who trained at hard-core acupuncture schools and has a calming zen kinda vibe.

At $90 an hour, I could afford to follow the recommended treatment schedule of twice a week for six weeks. In the first treatment, I realized that the focal point of the pain was underneath the left shoulder blade, which I believe is one of the spots on either side of the spine where a bunch of nerves traverse like a huge freeway interchange. That pain turns out to be a not-uncommon complaint amongst the mold-afflicted. I can remember it bothering me for at least 25 years.

Stabbing sharp pointy things into that messed-up cesspool of nerves felt horrible and good all at the same time — one of the joys of acupuncture. You give the acupuncturist directions to where it hurts the most and when the needle gets to the right place you’re all, “KILLLL IT KILL IIIIITTT KILL OHHHHHH aahhhhhh.”

Within the first five treatments, I learned to recognize and release tension in my shoulder and neck area as I went about my day. I changed my sitting habits so that I am as symmetrical as possible, with both feet on the floor, elbows not resting on anything, and leaning back a little rather than forward. On airplanes I use a rolled-up blanket behind my back and sit as symmetrically as possible for as long as I can in the torture chamber known as Economy. These changes had a definite effect on the shoulder pain.

18 months later, I wouldn’t say I was limber or strong in the shoulders, but I’m not favoring one side any longer, and there is no pain. I was supposed to keep stretching at home and to get regular massages, but I was pretty lazy about the former and my two experiences with the latter were at a franchise retail massage outfit staffed by idiots and reeking of microwaved fast food so I quit that.

If I take a large dose of the anti-inflammatory herb boswellin, my other various aches and pains go away completely for a day, but after two days on it, the frozen-shoulder-related area starts to hurt as if things were rubbing against each other. This is one of the reasons I’ve concluded that the big-picture view of my health is that I’ve got major inflammation in a lot of places and have for years, but it has since been reduced on a large scale. Knock on wood.
*Ten points if you get the reference.

What you might not know about liver damage

Adventures in Nutritional TherapyLast year I concluded I was on the wrong track re: my remaining stubborn health issues and I started revisiting theories I had abandoned earlier, either out of insufficient information or insufficient confirmation or because it was just too much of a hassle to think about. One of those theories was liver damage. I had suspected liver damage very early on, after the first bout with killer insomnia -– we’re talking 40 minutes of sleep a night for three months. That sprang up when I was given a two-month course of what turns out to be a famously toxic antifungal, Diflucan. However, over the years, dozens of blood and imaging liver function tests came back normal. (I never had a biopsy, because you can’t get one without abnormal liver panels unless you want to pay the $5,000 yourself.)

Here’s a list of liver damage symptoms and what each liver test does. I should note that I have never investigated each liver test the way I did with thyroid and iron tests. With the latter, I discovered there was a big gap between my doctors’ knowledge and the most recent medical knowledge about ideal lab results.

Back then, despite the lack of test evidence, I proceeded with alternative liver treatments anyway, including several rounds of acupuncture, a year of Chinese herbal medicine coordinated by my Doctor of Oriental Medicine and Harvard Med MD, the awesome Needleman, and whatever liver detox steps Ann Louise Gittleman recommended on her website, which escapes me now. I definitely had more energy with the herbals, and I could think more clearly after each acupuncture series, but even so, those health issues maintained their downward trajectory.

This time it finally occurred to me to seek out people who actually had serious liver damage, and I ended up in discussion forums on Hepatitis C, alcoholic cirrhosis, and acetaminophen poisoning. I made a few interesting discoveries. Apologies but I’m too tired at the moment to track down specific citations for all of these, but you can easily find online info on them.

  • Liver damage does not always show up on liver tests (aka liver panels, liver enzyme tests, or liver function tests). See this article. In fact, I was told long ago by Needleman that your liver might be half dead before a blood test would reveal anything. Try convincing your allopathic doctor of that. Go ahead. I’ll wait.
  • Liver damage is common in celiacs.
  • In fact, celiac-induced liver damage can develop in childhood.
  • Said liver damage does not always resolve with the gluten-free diet. (Which doesn’t mean it’s irreversible.)
  • It is not unusual for Hepatitis C patients to not know how they picked it up. It is spread by blood — e.g. a contaminated blood transfusion, contaminated medical equipment (as in these Oklahoma or Florida cases), or IV needles. It makes you wonder if poorly sterilized medical equipment is a bigger problem than commonly thought. Combine that with doctors’ reliance on deceptive liver tests when deciding whether to order the Hepatitis C test, and the fact that it has a 20-year or longer incubation period before it starts to destroy your liver, and it would appear there is a large, hidden pool of Hep C infected out there.
  • The government recently started a public service campaign for baby boomers to get tested for Hepatitis C out of fear that they were exposed by the blood supply before 1992, when routine testing began. However, my doctor, for one, had never heard of the campaign. I had to pay for the $189.00 test myself.
  • OTC treatments most commonly mentioned on discussion forums are methionine, N-acetyl cysteine (NAC), alpha lipoic acid (ALA), and vitamin B6 in the form of P5P. The first three all go toward making glutathione, which the liver uses to detoxify itself. You can also buy glutathione supplements, but some authorities believe it can’t be processed by the body as well as those precursors. Hep C patients are big on experimenting with this stuff because of the awful side effects of the pharmaceuticals used to treat it. One of them is actually suspected of causing multiple sclerosis in Hep C patients.
  • If you’re into herbals, herb company employees can be a good source of info. The owner of Blue Boy Herbs in Mississippi once spent 30 minutes on the phone with me answering question about herbs for the liver and telling me what his other customers had experienced. I personally love ‘em, and milk thistle was definitely helpful, or was until I reacted horribly to it anyway, but they might not be aggressive enough for severe, long-term damage.

Weird niacin deficiency symptom: perceptual changes

Recently I came across a discussion forum referring to the use of niacin for social anxiety at multi-gram doses. One commenter mentioned that based on her experience, either niacin has to be repleted in much larger amounts than commonly believed, or plays a much more important role in the diet. Or both.

This intrigued me. I’ve never experimented with niacin in any big way, because I never found any mention of big doses used for anything but heart disease or schizophrenia, the latter application made famous in the 60s by Dr. Abram Hoffer. Another issue was the annoying and unpredictable flushing. Somehow I had mistakenly concluded that niacinamide, a form that does not cause flushing, and no-flush niacin were the same thing, and since no-flush niacin definitely gives me flushes, I never bothered trying niacinamide. Duh.

I started looking around for more information on niacin deficiency. I came across this 1970 report by Dr. R.G. Green on, a site which is probably familiar to you if you’re really into nutritional therapy. Dr. Green, a family doctor in a poor area of Saskatchewan, described his experiences diagnosing subclinical pellagra among his patients, many of whom were Native Americans living below the poverty line. That is, they displayed symptoms that resolved with niacin, even though the symptoms did not manifest as the classic niacin deficiency disease of pellagra.

Pellagra is associated with poverty and low-protein diets and/or diets based on corn that has not been prepared in a way that releases the niacin for absorption. (The traditional way is to add ash to the cooking water.) Pellagra occurred in epidemic proportions in the U.S. at the turn of the 19th Century following the introduction of cheap, prepackaged cornmeal. The most famous pellagra sign is a red, rough rash wherever the skin is exposed to sun.

After spending some time with Dr. Hoffer, Green began looking more closely at patients who kept returning again and again with vague complaints of feeling unwell, despite having no physical problems. These complaints included difficulty learning, lack of interest in food, and fatigue. “X-rays and laboratory tests show nothing abnormal,” he wrote,” “yet still the patients complain. For the past 20 years I have been diagnosing them as neurotic, having flu, neurasthenia, sore throat, backache, etc. etc., for want of something better.”

Does that sound familiar?

He started asking these patients this list of questions (I’m copying from the article):

1. Does your face seem to change when you look in the mirror?
2. Do words move when you try to read?
3. Does the ground move when you walk?
4. Do you feel you walk on the ground or off the ground?
5. Do pictures move when you look at them?
6. Do you hear someone calling your name when you are alone?

If the patient said no to all of the above, the doctor would ask if they sometimes occurred. If the patient answered yes to some or all questions, Dr. Green proceeded with the Hoffer-Osmond Diagnostic (HOD) test, which is a list of 145 questions designed to evaluate the likelihood of schizophrenia. If the patient took longer than so-and-so many weeks on 1,500 – 3,000 mg of niacinamide a day to recover, Green would consider the possibility that they had schizophrenia. In that case, the treatment tended to be for life, rather than a simple matter of repletion and an improvement of diet. In the article he goes into more detail with three case histories.

I tried to find the HOD test online, but only found a paraphrasing — someone made an epic poem of it. It’s about halfway down this page on Hoffer’s website.

Dr. Green’s article is another example of the phenomenon I discovered over the years I’ve been investigating nutritional deficiencies: that after the mid-70s, the amount of information on the subject disappeared almost to nothing as prescription drugs gained prominence. As I’ve said elsewhere on the blog, I’ve got a list going of books on the topic written before then, but they’re so rare, I can’t afford them – $125 for a book is out of my league.

My second alterna-doc disaster

When I was unable to convince my regular alterna-doc that I was hypothyroid, I made the mistake of returning to the only other major alternative medicine practice in town, a Den of Incompetence I had sworn never to visit again. Dr. Dumbass had left the practice and I convinced myself that my earlier experience was just a fluke.

My thyroid symptoms had worsened significantly and I had made the startling discovery that my healthy diet was the culprit. It turns out that drinking raw kale juice every day for a year is a bad idea, even for healthy people. I printed out the articles I had found, including the one from a British running association’s website that said one should only drink raw goitrogens once a week, and went off to my appointment.

The new doctor was a native Korean. I told him my theory, described my symptoms. “No,” he said. “Food has nothing to do with it.” I showed him the articles. He didn’t even look at them. “Put your papers away,” he snapped. “You need to educate yourself.”

Only 15 minutes into the office visit and Snake Oil, Inc. was back on my shit list. Visions of me maligning Dr. Shithole up and down the North Coast danced in my head. And I still had 15 minutes left in the appointment.

The moron began blathering about my older test results and diagramming the pineal gland with arrows and chemical equations. None of it disproved or proved anything thyroid-related. After waxing pompous for a while he said, “I think you have a problem with your thyroid.” He wrote a prescription for 1 grain of Armour, which is a pretty big dose to start a person on. It would have given me heart palpitations, not that I knew it at the time. I discovered later that I could barely handle 1/4 grain.

Then he said, “Why do you not wear makeup? Don’t you want to get married?”

Having never been addressed in this manner in my entire life, I began sputtering. I don’t know what I said. He followed that gem up a few minutes later with “You should not be so choosy. After all, you are not a princess.”

Back I went to my stand-by alterna-doc, determined not to take no for an answer. I probably would have considered taking hostages at that point. When I described the raw veggie juicing debacle and showed her the internet info warning about it, she said, “Really? I didn’t know that!” Which you have probably noticed in your own experience is a rarity among doctors. I left her office with an Rx for 1/4 grain of Armour, and after three weeks I felt much better.

For the next several years no medical practitioner who crossed my path escaped without hearing the story of the Pencil-di$%ed Pseudo-M.D. of Misogyny, may the fleas of a thousand camels infest his armpits. Even the coolest cucumber of them all, the reigning queen of CAM-dom in my area, could not control the skyward lift of her eyebrows after I shared that anecdote. Her nurse practitioner was less restrained and sort of shrieked. Another osteopath, younger and less jaded, actually used the F-word, which I found very satisfying, but I’m that kind of girl, if you haven’t noticed. They all made the whole miserable experience almost worth it.

Conditions to consider if you’ve been mysteriously sub-par for a long time

Updated August 14, 2017.

Here’s a list of conditions I’ve investigated over the years as I tried to solve my health problems. You’ve no doubt heard of some of them but might think the symptoms don’t apply to you, or might have been given the wrong test or had your test results evaluated with the wrong lab ranges. All but two of the items listed (Lyme disease and mold / biotoxin poisoning) have the benefit of being easy (if not cheap) to test for or at least rule out.

You cannot trust your doctor to know the right lab ranges, so if you do have tests taken, make sure you arrange to have copies of the test results sent to you. I can’t be the only person who had a ferritin so low I couldn’t even sit up straight, and yet was told repeatedly over the years that my iron levels were fine.

B12 deficiency. This requires two or ideally three tests: the usual one, plus two you’ll have to specifically ask your doctor for and which your insurance company might not cover. If you are already taking B12 supplements, the tests will not be accurate, a fact your doctor might not be aware of. The book Could It Be B12 has up-to-date info, or if your brain fog isn’t too bad you can look at the intro docs at the Vitamin B12 Deficiency is Commonly Misdiagnosed forum.

Bromide poisoning. This substance is everywhere in our environment and food supply, and because of its link to breast cancer, sites about that topic have the most info. Here’s a short intro on the subject. This condition tends to go hand in hand with iodine deficiency (see below).

Food reactions. This seems really obvious, but it might be that you are reacting to a certain category of food but haven’t tried enough types of foods in that category to make the connection. If you’re lucky, it might be a category connected to a deficiency you can correct. For example, oxalates lower zinc levels, salicylates lower vitamin K, and goitrogens can lower iodine.

Histamine: the Low (histapenia), the High (histadelia), and the Intolerant. People think of histamine in terms of allergies, but your histamine can go awry for non-allergy related reasons and cause all sorts of wackiness, many involving your mental state. (“Histamine intolerance” refers to having a body that wanders into histadelia territory too easily.)

If I have this right, two main culprits are behind high histamine – wonky methylation and/or? low DAO enzyme levels. This article on histamine intolerance describes it in terms of low DAO. This article on the effect of brain histamine levels focuses on methylation. Ignore the fact that histamine is spelled wrong for a third of the article. Also be warned that the author is behind the times in her belief that folic acid and vitamin B12 should not be used for histadelia. There are now methylated versions of each on the market that are used to treat methylation issues.

Iodine deficiency. This deficiency is getting more and more common but misconceptions abound. For one thing, what doctors assume are hyperthyroid reactions to iodine are in fact usually bromide detox symptoms. Drs. Guy E. Abraham and David Brownstein have books on the subject. A primer is at Breast Cancer Choices. The Yahoo Iodine Group also has intro documents. (Be sure to read the bit about how they tracked down the source of the oft-repeated warning about iodine causing heart failure.)

Iron deficiency. This requires four lab tests to evaluate correctly. Stop the Thyroid Madness has a page on recommended tests and lab ranges and how to take iron supplements. If you’ve lost hair due to low iron, you’ve probably read in your internet research that your ferritin level has to be in the 70s for three months before your hair will grow back.

Long-term effects of prescription drugs or supplements. Some prescription drugs will affect your biochemistry for 15 years, but your doctor will tell you they are out of your system in a few months. Xanax, for example, can disastrously affect your levels of the neurotransmitter GABA, which is involved in sleep. Also see the books Drug Muggers by Suzy Cohen, Supplement Your Prescription by Hyla Kass, and The Nutritional Cost of Prescription Drugs by Ross Pelton and James LaValle. Blogger Monica Cassani at Beyond Meds also covers this subject a lot.

The same can be said of any supplement. If you ever took anything in large amounts for a long period of time, it might have affected levels of its cofactors. Vitamin D, for example, can lower vitamin K levels, among others. L-glutamine, often used in huge amounts by body builders, can deplete vitamin B6. Nitrous oxide, aka laughing gas — you know who you are — can deplete folate.

Lyme disease. This is significantly under-diagnosed. Mainstream doctors rely on an unreliable blood test for diagnosis and often won’t order the test if you don’t remember getting the stereotypical bullseye rash, which half of patients don’t get anyway. Unfortunately the far more accurate test (about 75%, said one alterna-doc) by the company Igenex is upwards of $750. The good new is you don’t need a prescription.

Mold or biotoxin poisoning. One of the first doctors to bring this to the public’s attention was Ritchie Shoemaker. His books are a good place to start. I also recommend the pdfs put out by a citizen science group made up of a group of his former followers, who are making many new discoveries about effective treatment and about mold behavior. Some of their findings about recovering from mold and other biotoxin poisoning, borne out of personal experience, differ significantly from Shoemaker’s opinions. For one thing, the group has found that mold remediation of a home rarely works when someone has reached a certain level of illness, because it cannot eliminate the toxins themselves, only the mold spores. A significant percentage of “moldies” have also been diagnosed with Lyme.

Pyroluria. In pyroluria, the body can’t process sufficient vitamin B6. You can be born with it, in which case your life probably sucks, or it can develop from a long-term deficiency. Convincing your doctor to test for it might not be easy, but you can arrange it yourself for about $129. I used The Bio-Center Laboratory in Wichita, Kansas. The test does not require a prescription or blood draw but it does require careful handling — refrigeration, close timing, etc. Here is a list of symptoms.

Thyroid wonkiness. Most doctors only test TSH and not the other hormones, and use the wrong lab ranges to evaluate results. Stop the Thyroid Madness has lists of recommended lab work and optimal lab values.

Please let me know if you have any other suggestions for this list.

Mark Hyman on functional medicine; plus: diagram your way to health!

In this TEDMED 2010 Talk, Mark Hyman, MD describes functional medicine and how he came to embrace it after his health tanked following a perfect storm of stressors. Among other things, he had mercury poisoning from a year of living in China. (Here’s his TEDMED 2010 Conference bio.)

At about 8:23 he displays a diagram of how his health problems interacted and manifested themselves. Here’s a screenshot:

He starts in the center with what he thinks caused everything, then makes a separate circle for the resulting nutritional deficiencies and for the digestive, immune, hormone, energy/mitochondrial, and detoxification (liver and kidneys, I guess) symptoms that arose. I’m not sure what the dotted lines indicate. Maybe he was just doodling.

Although I once drew a diagram of how I think my various remaining nutritional deficiencies interact, I never thought to put all these elements together. Using Hyman’s model I herewith offer a theoretical breakdown of my multitudinous medical mysteries. I explored these aspects one by one over the past 12+ years, focusing most of my effort on nutritional deficiencies, and I’m still trying to figure it all out — the ones in red are unresolved. Hyman attacked them all at once and got better in a year. La de da.

Where he’s got conditions and symptoms lumped together on his diagram, I’ve tried to separate mine. I also put symptoms in more than one circle where I think they have more than one cause. I added a circle for the central nervous system.

The nutritional deficiencies can overlap with the other circles. For example, a thiamine (vitamin B1) deficiency will affect your mitochondria’s ability to, uh, mitochondriate, but it’s not the only thing that can affect them***.

As for functional medicine, although I love the idea and got an appointment with a local FM practice about two days after I first heard about it (long before I saw this video), I can’t recommend that group. I did find the director and the nutritional something-or-other with whom I spent several hours to be compassionate, knowledgeable people. We decided finally to start with working on neurotransmitters — that is, supplements of amino acids, their precursors — which had impressive results in just a few days. After a week, though, I developed splitting headaches, complete insomnia, and zombie brain. When I called the office for help, they took two weeks to reply even after repeated calls, and then all they had to suggest was that I might have a damaged liver and that acupuncture might help.

For some of the tests, the nutritional guy was not legally allowed to discuss or analyze them with me, and that fell to an MD who 1) suggested I needed Ritalin when I mentioned the brain fog, and 2) repeated the extremely outdated theory that a type of celiac disease is outgrown in late childhood.

Better luck to you in finding a decent functional medicine practice.

***Speaking of mitochondria, here’s another video from the TED empire, this one a TEDx Talk by Dr. Terry Wahls, who ended her disabling MS symptoms by addressing that end of things.