Tag Archives: chronic illness

Chronic illness and “nice” people

I recently started thinking again about a phenomenon I first experienced at the nadir of my health woes 14 years ago, and several times since. I wondered briefly about it each time it happened, but was too beleaguered and distracted to dwell on it. To wit: on several occasions I developed noticeable symptoms over a short period of time that were visible to others. Twice I developed slurred speech, stammering, and word loss. For a while my memory was so bad I couldn’t repeat a telephone number back to you or remember articles I had edited two months before. I also once gained 21 pounds in six weeks (a 15% weight gain).

Not one person ever mentioned any of this to me. Not my closest friends, not family members, not medium-close friends or friends at work, not coworkers or bosses or mentors, and not doctors.

Is that not peculiar? It’s not like I had a small social group. I had several sets of friends and several groups of family members I visited, and I worked in busy offices where I interacted with dozens of people every day.

So, yeah, thanks for being understanding and all, except that whatever questions my behavior raised were asked behind my back, with no input from me. This is bad. I have no idea now if that behavior was a factor in employment offers or project assignments or social invitations or lack thereof.

Obviously some friends were going through their own shit or had distractions of their own, but still. Your support network, or whatever you call the group of people you think will tell you when you’re walking funny and have weird marks on the back of your neck after aliens abduct you and wipe your memory, should be tight enough that they don’t all fail you at once.

I always prided myself on my “nice” friends, but now I think they are not the people you want around when things go bad. For one thing, they might be your friends only because they’re too nice NOT to be your friend. They don’t cull their social contacts enough. Or because they want to be perceived as a nice person and don’t even think about what they actually want in a friend.

I did an inventory of all the friends I’ve had that I could trust to tell me something unflattering about myself without being mean-spirited. There have been 2.5. All were 1,500 miles away during the aforementioned episodes. Friend 1 would not hesitate to tell me if I was handling a situation gracelessly. As in, “You’re being an asshole.” I’m guessing whatever reticence she had was burned away after giving birth to five kids in seven years. Friend 2 gave me feedback that would’ve been helpful a lot earlier and that I’m still grateful for, as in, “People think you’re weird when you do that.” In turn I suggested it was time she considered an eyeshadow color other than sparkly turquoise. “This might be the beginning of a beautiful friendship,” she said. Friend 2.5 could be trusted to tell me something bad but only if it related to my physical appearance. As in, “That dress is not bohemian, it’s Dust Bowl.”

Friend 2 turned out to be on the lam from embezzlement charges. As for Friend 2.5, although she is a fairly respectable citizen now, in high school she removed all the PCs from the computer lab, loaded them into a pickup, and dumped them in a ravine. Make of that what you will.

Chronic illness and nice people adnuther.com

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.

Getting the most out of a doctor’s visit, especially for chronic, unexplained illness

Updated January 18, 2017

After a dozen years and scores of doctor’s appointments to investigate various angles of my health annoyances, I have discovered that the majority of doctors will do the same time-wasting things over and over. This is especially maddening when I am dealing with a complementary/alternative medicine (CAM) practitioner not covered by my insurance. Here is a list of suggestions for dealing with this.

I suggest you treat appointments like you’re running a business meeting with the head of another department you know nothing about for a project you’ll both be working on. You have no reason to be embarrassed by the fact that you don’t know a great deal about his subject, and the other person has no reason to be surprised if you do not. You both have certain things you need to impart and learn in a very short time and your time — yours more than his — is very valuable. You won’t be shy about talking about costs, since the usual social inhibitions against discussing money do not apply when it comes to a businessperson protecting her operating budget.

Which isn’t to say that the doctor in question will play along with this approach. I have yet to be disabused of the notion that the majority of doctors become doctors because they want to be right, not because they want to help people. They’ve been taught their entire educational and professional careers that they hold an unusual, coveted body of knowledge, that they are members of one of the most intelligent strata of society, and that patients need to be protected from their ignorance — we’d gnaw off our own fingers if band-aids hadn’t been invented.

None of these are true anymore. So:

1. Don’t worry about being polite, being liked, or being agreeable.

2. Have an “elevator speech” ready (as they say in career advice circles) of what you hope to accomplish in the meeting, and a brief rundown of your history. When he asks what you’re there for, start the speech and do not let him interrupt you. Keep it short, though. Figure out beforehand what the salient points are.

3. Interrupt him if he’s talking too much on a tangent.

4. Don’t take hemming-and-hawing as no. Doctors are often ambivalent about ordering non-standard tests, for example, but if you state simply and repeatedly that that is what you want, they’ll usually cooperate. They have rarely refused me and will usually do what they can to find the appropriate insurance code for coverage, if it is possible. (Ms. West mentions this as well.)

5. Watch out for the following tricks used to stop you from asking questions or to deal with the doctor’s discomfort at what Dr. Marie Savard refers to as the “new paradigm of a partnership with you” that you are forcing on him. Don’t be sidetracked. Yank the conversation back. Ignore him and continue your questions, or repeat that you are there to get information.

  • Over-explaining. A favorite tactic is drawing diagrams of molecular chemical reactions.
  • Sharing his theories about the causes of obesity or autism or another topic unrelated to your health issue
  • Telling a joke
  • Complimenting you on your intelligence, etc.
  • Laughing at your ideas

6. Manage your expectations.

  • Don’t expect him to be interested or impressed by anything you’ve done.
  • Don’t expect him to express sympathy.
  • Don’t be surprised if he expresses disapproval at something else you’re trying on your own or with another practitioner. If you are not there for feedback, ignore him, interrupt him and continue questioning. Remember, doctors are a lot like cats: they don’t like doing things that aren’t their idea.

7. Ask him to prioritize for cost purposes whatever treatment suggestions he offers. I’ve never met anyone who was unsympathetic or uncooperative on this point.

8. If he wants to run tests, ask him if any of them can be avoided. Also ask if any can give false positives based on supplements you take. For example, getting a vitamin B12 test if you’re taking B12 supplements is pointless. If you had a recent physical with your regular, traditional doctor, ask if any of those results can be used.

In all these years I’ve been pleasantly surprised by a compassionate, interested practitioner maybe three times. The healthcare system is flawed and broken and unwieldy and pretending it isn’t is just another way to waste your energy.

The awesome Monica Cassani of the blog Beyond Meds has a post on this subject, emphasizing the dangers of being an obedient patient.