Treatment Update

Today (actually last Thursday, it took me a while to write this), I had my follow-up appointment with Dr. Kim to go over the gaggle of blood tests I had done in March. There is a lot that I am adding into my regimen, so I wanted to document it all asap before I forget everything she said.

We’re going to try hyperbaric oxygen therapy! I said it as a joke as we walked past the room with the claustrophobia chamber: “When do I get to dive?” And she thought it was actually a good idea. So, I’m going to start with a very short time (10-15 minutes) and work up to 60 minutes “at depth”, with supplemental oxygen, once a week. This is out-of-pocket, of course, and pricey at $150-$175 per 60-minute session, so I’ll try a few and see how I do.

I am starting a slow treatment for candida with Nystatin, Diflucan and Thorne SF722. Here’s the protocol:
*Nystatin on Mondays and 2 capsules a day of Thorne SF722 Tuesday through Sunday for 3 weeks.
*Then the same thing with Diflucan on Mondays for 3 weeks.
*Then Nysatin Mondays, Diflucan Thursdays and 2 SF722s on the other days for 2 months.
She didn’t mention diet and I didn’t bring it up. Yippee!

I’m increasing oral progesterone to 100mg/day (I’m at 25mg now), staying at 25mg of oral pregnenolone (uh oh, I just realised while adding this link that I’ve been swallowing my pregnenolone whole, not realising it’s sublingual… grreeaaat 😝) and changing from topical DHEA to 25mg oral.

My sex hormone binding globulin (SHBG) is high, which she said functionally lowers hormone levels. I’m going to start nettle root capsules (work up to 300mg twice a day) to bring SHBG down (not to be confused with nettle leaf, which I drink in tea every day).

I’m not anemic, but my iron is low. She wants me to add Floridix, but after reviewing the ingredients, I may just do a generic ferrous gluconate supplement for 6 months.

For sleep:
*5HTP, 75-150 mg at night (this was recommended by a friend–thank you, M–and Dr. Kim thought it was worth a shot). She says it may even interact with the 5HT4 receptors in my GI tract and help motility. 30-50 mg P5P (active vitamin B6) should be taken with 5HTP.
*Dr. Yasko recommended I get my lithium tested (she answered a quick question on Facebook, I’m not working with her) and Dr. Kim thought I could try supplementing a 20-40 mg per day without a test and see if it helps.
*Belsomra, a prescription sleep medication given to me by my sleep doctor, is still sitting on my shelf a year later and I intend to take a small nibble one of these days. It doesn’t interact with 5HTP, so I can try all the things.

For constipation, I am going to try MotilPro (work up to 3 capsules morning and noon) and a bit of iodine in the form of potassium iodide (5-20 mg 4 times per week).

She said my vitamin D at 40.4 ng/mL is actually fine and I should continue taking 4,000iu/day (I take Thorne liquid D3+K2). She bases this on my calcitriol (vitamin D 1,25) number, which is good at 48.2pg/mL, right in the middle of the range.

She’s not worried about my high cholesterol or LDL at all, so I’m going to shake off my concern about that and trust her.

She said not to worry about an Igenex lyme test or my positive bartonella test for now. She is going to treat my high mycoplasma pneumoniae eventually and she said that treatment is similar to what she’d do for tick-borne infections. I have to say, I kind of like that a reputable LLND isn’t jumping straight into Lyme testing and treatment. She’s definitely not a one-trick pony.

I’ll start antimicrobials for M. pneumoniae, CMV, HHV6 and EBV later this year when my body is stronger. She thinks it will most likely take at least 2 years to get those blood tests into the normal ranges (to the point where my immune system isn’t mounting a response against reactivated infections).

Other supplements* and prescriptions I currently take, many sporadically:

MitoCore
CoQ10/ubiquinol
Humic Acid
Thorne Trace Minerals
Thorne Riboflavin-5-phosphate
Thorne Niacel
Thorne vitamin D3+K2
Thorne B complex #6
Magnesium malate
Magnesium glycinate
Jigsaw magnesium
Potassium gluconate
Biotin
Thiamin
Vitamin A
Vitamin C
Wormwood
HCL + gentian + pepsin
Enzymedica Digest Basic
Enzymedica Digest Spectrum
Charcoal
Levothyroxine (100mcg/day)
Liothyronine (15mcg twice/day)
Prednisone (3mg), Benadryl (25mg), Zantac (10mg), fluids (sodium chloride 0.9%, 1 liter) and Gamunex-C (5g) during infusions.

*By the way, all the supplement links here are for Pure Formulas (and all brands are gluten-free, soy-free and well-regarded). I am not affiliated with them in any way and I can’t get kick-backs if you buy something from these links like lots of bloggers that make money that way (although, maybe I should look into that!). I’ve just done a lot of research and they are consistently the best for me. If you decide to order from them and you want to be a kind and selfless friend, you can use my referral code: RRKMLW or shop here. Once you complete an order (without using any of your own reward points), I get a $10 credit. 😀 I like Pure Formulas because a) free shipping with no minimum; b) 2-day shipping always if you have ShopRunner, which I do through my AmEx; c) you earn cash credits for your orders; d) you can return products you have problems with, even if opened; and e) I have contacted many supplement manufacturers to ask about recommended online retailers (because I’ve read some scary articles about knock-off supplements on Amazon) and almost all of them have told me Pure Formulas is reputable. Last thought: if you comment below with your Pure Formulas referral code I will use one whenever I order (which is often).

Advertisements

Doctors, Tests and Direction.

So, the MD that my husband and I have seen since 2007 has left her practice abruptly and I’m quite sad because we had a great relationship and mutual respect. She trusted me and would run tests that I requested if I had good reasons. She also knew me before I was sick and that was very important to me. She knew me when I was bouncing off the walls with energy and happy. She saw me a week before ME hit for a check up and I told her my only problem was sore muscles which I attributed to sitting at a desk after so many years walking the floors of restaurants. She witnessed the abrupt change in my abilities when all the other doctors I’ve seen have nothing to compare my current level of health to.

Now my two doctors are naturopaths: Dr. Erin and Dr. Kim. I had follow-ups with both of them in the last 10 days. Dr. Erin has put me on 25 mg of DHEA and progesterone. They’re topical, compounded only with coconut oil, nothing else. She’s hoping these will feed down both pathways to raise all the other hormones that are low.

image

And by “pathways”, I mean, instead of giving me just Pregnenolone (at the top of the “map”) and letting my body do with it what it wants, the DHEA and progesterone insure that (in theory) I’m feeding all branches of hormone production:

image

My thyroid hormones continue to be low, even though I almost doubled my dose a few months ago, so I’m changing to compounded T3 and T4. Dr. Erin doesn’t want me to try NDT (natural desiccated thyroid from pigs) because I’m so reactive right now, but she’s hoping compounded meds without the crappy gluten- and dairy-derived fillers will help me absorb the hormones better. I’m really nervous about the change because I’ve taken the same generic pills every morning for 6 years — well before I got sick.

My salivary cortisol test showed high levels throughout the whole day, especially at night. However, Dr. Erin said she thought functionally I was still low, her theory being that my body is compensating for something and that cortisol is either being converted to a less active form or receptors are down-regulated, which results in my body needing to produce more to get the same results. She also wants me to start humic acid (for chronic infections) and a homeopathic lotion to rub into my sternum which can supposedly desensitise my body and help reactivity. Not sure how much faith I have in homeopathy, but there’s no harm in it, other than the cost. I’ve also been told to start daily “hydrotherapy” (basically, hot and cold towels to boost immune function) and oiling my body to absorb additional fat (some serious old wives’ shit going on here).

Dr. Kim ran a bunch of blood tests. The good news is my CBC, metabolic panel, folate, iron and vitamin D are all within normal range (the latter two I would like to be higher). The bad news is, total immunoglobulin and all 4 subclasses are even lower than they were when Dr. Chia tested them. I also had high levels of Mycoplasma Pneumoniae IgG, HHV6 IgG (which I already knew) and she said I was “dripping in EBV.” Gross.

The final blow was candida is high. Those who know me, know I have dreaded the day I was tested for candida and purposely didn’t bring it up with the last 30 doctors because I don’t want to face my sugar addiction. Dr. Kim isn’t insisting I go on a strict no-sugar diet, god love her, because I think she recognises my need for the joy it provides and, really, I try to be responsible — a bit of dark chocolate, ice cream, some honey, jam, fruit, dates… It’s not like the good ol’ days where I could eat a Dairy Queen Blizzard or a whole purple Yorkie without thinking twice. She is putting me on a prescription anti-fungal, Nystatin, a pulsed dose — 4 days on, 3 days off.

I am waiting to hear from insurance about sub-cutaneous IgG (because I’m too scared to start with IVIG) and, in the meantime, I am starting to supplement copper, low dose B-complex, additional B6 and B1, increasing Thorne Trace Minerals to twice a day and magnesium glycinate to 4 times a day, as well as homemade electrolyte water all day long.

I’m hoping and praying that I will feel like a different person once my hormones and thyroid are balanced. Then my blood pressure will come up and my brain will work better, headaches will dissipate, my immune system will be able to suppress the infections, sleep will get better, reactions will fade, fatigue will lift and we’ll all live happily ever after!!

The Reaction Chronicles

I’ve been adding a supplement or trying a drug or testing a food every few days for a while, holding off before and during my period and if I am reactionary. I have recently had some of the most violent side effects to some of the most innocuous substances and I still find it incomprehensible. In my old life — that old Elizabeth who started 10 supplements at full dose on the same day — I never would have believed that such a small amount of something “harmless” could cause such an extreme reaction. Most notably, ElectroMix electrolytes paradoxically causing extreme blood pressure crashes, D-ribose causing extreme blood sugar crashes and Dr. Yasko’s All In One vitamin causing such terrible bone and muscle pain and cramping from the waste down that I didn’t sleep for three days and was considering going to the hospital and begging for an epidural.

I wanted to chronicle these trials so I remember. Here are my notes from the last four months. No note means no discernible reaction.

  • 4/26/14: Started CoQ10 100mg
  • 4/23/14: Started Thorn Bio-gest
  • 4/20/14: Started Now Foods Yucca
  • 4/15/14: Started Prednisone (bad sleep, swollen hands and feet, grumpy, facial hair, very bad tachycarrdia)
  • 4/13/14: Started Thorne Riboflavin 5 phosphate
  • 4/12/14: Started 2 Fish oil capsules
  • 4/10/14: Started Calm magnesium + calcium
  • 4/3/14: Changed Zyrtec brand
  • 4/1/14: Started Dr. Yasko’s All In One vitamin (unimaginable pain from waste down in bones and muscles; spine muscles jumping; worst reaction ever)
  • 3/26/14: Started D-ribose (terrible BS crashes)
  • 3/25/14: Started Desonide cream and tried Valium (horrific headache, stuffy nose, SOB)
  • 3/24/14: Started Dr. Yasko’s digestive enzymes
  • 3/22/14: Tried Baclofen (bit of a headache)
  • 3/21/14: Started Molybdenum and Vivite face wash
  • 3/19/14: Started Finacea, Cereve face wash and clindamycin lotion.
  • 3/11/14: Tried Electromix (terrible BP crashes)
  • 3/8/14: Tried L-glutamine (sickest day in months)
  • 3/6/14: Started Jarrow Formulas Acetyl-l-carnitine
  • 3/5/14: Started Zyrtec
  • 2/27/14: Tried egg (very bad next day)
  • 2/26/14: Tried fish
  • 2/24/14: Tried avocado
  • 2/21/14: Started Zantac (terrible stomach pain and nausea)
  • 2/15/14: Tried gelatin again (helped sleep)
  • 2/14/14: Tried Valium (headache, stuffy nose)
  • 2/12/14: Tried Cannabis pill again
  • 2/5/14: Tried Thorn Medibulk
  • 2/4/14: Tried Benadryl for sleep and gelatin (hungover next day)
  • 2/2/14: Tried Tizanidine
  • 2/1/14: Tried egg, avocado and cannabis oil (very bad next day)
  • 1/26/14: Tried egg (itchy throat spot, very bad next day)
  • 1/20/14: Tried citrus
  • 1/5/14: Tried soy (bad headache)
  • 1/31/13: Tried Ativan (dopey, headache, bad the next day)
  • 12/24/13: Tried Trazodone again
  • 12/19/13: Tried Trazodone again
  • 12/16/13: Tried Trazodone
  • 12/12/13: Started PS
  • 12/6/13: Tried corn (next day bad bowel and headache)
  • 12/3/13: Started probiotics

Other reactions of notable mention:

January 1st, 2014

This day last year, I said 2012 was the worst year of my life. I also stated emphatically that 2013 would look very different. And it did. But not in a good way. In 2012, I was still working for 5 months of the year. I got to spend 11 days with my soul sister, E., when she visited from Dublin. I was able to run errands, go to the dog park, talk on the phone, and see friends for 9 months of 2012. Unfortunately, that all went away. Now, I can safely say 2013 was the worst year of my life.

The details are too difficult and depressing to describe or dwell on, but neither will I paint a silver lining around this dark life. It has been unspeakably difficult, what didn’t kill me did not make me stronger, and I’m not grateful for the lessons I have learned since being sick. I am a sadder, scared-er, weaker, lonelier person and I’d give anything to go back to the ignorance and energy of healthier days.

However, I am much more aware of things I used to take for granted and I am more thankful than I’ve ever been: For every bird, tree, and arc of sunshine. For every single dollar that I saved before the abrupt halt of income. For every time a snort of laughter escapes me; every day that my legs hold me; and every book, film, song that distracts me. For every time someone vents to me about their life or asks for my opinion or feels they can use my muscle-wasted shoulder to cry on. For every time someone braves the thin ice of chronic illness to ask what life is like for us or see how I am feeling or offer to help, knowing full well they risk breaking through to the deep despair beneath.

Most of all, I am thankful for my family. My father, mother, brothers, sister, in-laws, friends, husband and dogs. (Oh, husband and dogs! I am alive today because of you! And I fight for tomorrow because of you.) Each day that they are healthy brings me solace and I experience stark, unfettered joy at every festive Facebook photo of holiday parties, restaurant dinners and energy-filled activities. So, keep singing, fishing, working, exercising and traveling, everyone! And I will live vicariously… Just, please, promise me that you do it with an eyes-wide-open acknowledgement of how short and fragile our journey is on this earth.

Here is my 2013 wrap up:

January: Was sorely disappointed at the Chronic Fatigue Clinic; saw first private doctor, tried cranio-sacral therapy.
February: Not much except stool and saliva tests.
March: Was sorely disappointed at second rheumatologist visit; saw second sleep doctor; had the 4 best days between September, 2012 and now; Zyrtec trial.
April: Got teeth cleaned; started seeing wonderful physical therapist; started the awful process of getting an oral appliance for sleep apnea which still hasn’t happened, almost 9 months later; Seriphos trial; started Chinese herbs.
May: New nephew R. was born; saw dermatologist; phophatidylserine trial; Nasonex trial; tried Tizanidine; turned 40; dear friend E.S. died far too young.
June: My mother and D. visited; saw cardiologist; tried valarian; started Unisom; Gabapentin trial; added rice back to my diet.
July: My father visited; stopped weekly therapy; stopped phone calls for the most part; stopped Chinese herbs.
August: Stopped eating soy, citrus; added lentils, garbanzo beans; tried Trazodone; stopped all vitamins and supplements; J. and Z. gave me a scooter: my ticket to some freedom.
September: My mother and brother, T. visited; abdominal pain started; husband’s family visited; celebrated 15th anniversary.
October: Brother A. visited; saw ENT doctor; saw “environmental” doctor; saw neurologist; had bad reaction to Unisom; tried Xanax; Zetonna trial; had hellish 2-week repercussions to autonomic testing.
November: Tried low-histamine diet for 5 weeks; methylation pathway, mycotoxin and adrenal tests; started vitamins again and Metagenics shakes; tried iv fluids and caused anaphylactoid reaction; another zyrtec trial; saw allergist; steps per day decreased below 700 and haven’t come back up.
December: New nephew G. was born; Christmas with sister; saw ophthalmologist; started juicing; tried Ativan.

Like last year, there were births, deaths, doctors, drugs, symptoms, setbacks and disappointments. And, like last year, what I see when I look at this is how lucky I am to have family that would travel across the city, country or ocean to visit me in my home and offer love and support, without judgement.

Happy new year to you all. 2014, please look different than 2013 ~ only in a good way.

Hubby sweeping in the new year, a family tradition. :)

Hubby sweeping in the new year, a family tradition. 🙂

Remember the little moments,

like this,

that were good.

Cheers.

~James Gandolfini in The Sopranos R.I.P.

My So-Called Life

The following is a glimpse into some of the ways my life has changed since ME became my constant companion.

20131124-114040.jpg
Vitamins, supplements and electrolytes, oh my! The only supplement that passed my lips pre-ME was an Emergen-C every once in a while. Now this. I just started taking B vitamins again after a 3-month pill hiatus. Every once in a while, I just need to get “clean”.

image
My drug stash. I hoard them, but don’t take them. Call it preparedness or call it paranoia, I don’t mind. After winding up in the emergency room a dozen times, I like the security of having meds on hand. What if there’s an earthquake and we need immediate painkillers? Nuff said.

image
This is an example of how I test drugs. That dot in my palm is 1/8 of a Xanax…which had no effect but a hive on my throat…which means I probably won’t try it again.

image

Cramps, spasms, aches, sprains. I never knew you could have muscle pain like this. After bartending three 12-hour shifts in a row or after being on my feet for 15 hours during a restaurant opening, I never came close to the un-ignorable myalgia that exists in this disease.

image

Yes, all these clothes are clean and, yes, they have been in this pile for a month. Folding involves a lot of arm action and I’m not willing to give up, say, loving on my dogs because I used up my arm movement quota to get neat clothes.

image

Thank god we (he) built the walk-in shower when we first moved into this house. It makes it easy to wash 110-pound dogs and it gives a flat surface for a chair for me to sit on. Yes, this is a crappy metal folding chair ~ I ordered the fancy shower stool and it was large, cumbersome and unstable. I toppled off it within two minutes and I’m only wee; I can’t imagine a bigger person having to use one of those things.

image

I took this picture in August. These are my “sun slippers” ~ because, even when it is so hot out that I have to lie in the shade with minimal clothes on, the ice blocks at the end of my legs need to be covered and in the sun.

image

Shocking, isn’t it? Welcome to peaceful sleep. Zeo headband, amber-lensed glasses for blocking the blue light in my phone, cpap nasal mask and tape over my mouth. Haha! No wonder I’m exhausted. 😉

image

Bedroom in the siting room. My husband moved to the basement room last year because he kept waking me up at night, but, this summer our bedroom got too hot for my sensitive system, so we swapped and I went to the basement. But, every teensy squeak of the floor boards above would wake me (and I don’t go back to sleep), so my husband moved to the living room where I couldn’t hear him. Poor guy.

image

BUT, the basement bedroom has no window shades and even the light from the moon wakes me, so, as a temporary measure, we (he) covered the windows with tin foil. My own sensory-deprivation chamber. Luckily, we don’t have many guests. 🙂

imageimage
My crazy numbers: High heart rate because I dared to carry some stuff upstairs and low blood sugar because I dared to eat breakfast (I have reactive hypoglycemia).

photo (1)
What my hair used to look like a few years ago and what it looks like now ~ lank, brown, going grey, unwashed, and always in a ponytail. I miss feeling pretty!

photo (2)
My crazy skin. This makes me look so gnarly! My only constant skin issue is acne (which has been worse than ever since I came off the birth control pill 11 months ago), but, every once in a while, my autoimmune urticaria, sensitivities and rashes rear their ugly heads.

Image-1 (1)
Blood pooling. *No filters were used in the making of these pictures (although they were taken at different times of day and in different seasons). Thanks to Jackie at LethargicSmiles for the blood pooling photo inspiration.

Jobst Relief, Thigh CT,  Small, Beige
Some of the products I’ve purchased in the last year to try to help my IBS, my ANS, my allergies and my insomnia. I really miss the days when I didn’t read the ingredients of mouthwash!

Thanks for taking the tour! And thanks to Patrick at Quixotic for giving me this idea.

Over to you: What has changed in your life since you became sick?

Title Credit

DIETS Part I: gluten-free, allergy, autoimmune/anti-inflammatory, classic elimination, and low-histamine.

My mother told me recently that she only gave me soy milk for a long time as a child after my allergy testing showed I was allergic to half of the things on this planet. This is when I was 3. I’ve always known the story of the skin-prick tests done on my tiny 3-year old back. My mother was torn in pieces listening to her baby wail, so I’ve heard about it often. I knew the testing showed I was allergic to lettuce and rabbits and newspaper and so many other things it seemed like a joke. I thought we had always just ignored it to no consequence and that the first thing I ever stopped consuming was MSG sometime in the 90s. I kept swelling. One day, I awoke with my face blown up like a balloon: my eyes were slits, my lips made it difficult to speak, I could barely bend my fingers. This happened after eating frozen egg rolls in the wee hours, after a night at the pub, so I became really vigilant about avoiding MSG. Then, a few years later, I ate at a Thai restaurant with my sister. I never tempted fate with Asian food, but, god, I missed it! and the restaurant swore there was no MSG in their food. The next day, my face was swelled up, so I never tried that again. I still don’t know if the culprit is definitely MSG, but avoiding it, as well as all Asian food, stopped those acute episodes.

My next elimination was alcohol in 2002. It should have been difficult, but I thought it might be causing me to repeatedly go into anaphylactic shock, so I had no choice. When you’re worried about dying, you’ll give up anything.

I ate and drank anything I wanted for ten more years. And I ate a lot. Since I shed my college weight, I’ve always been around 7 stone (I haven’t switched to thinking of myself in pounds because I like the nice neatness of “7 stone”) and my husband would joke that I ate way more than he did (he’s 14 inches taller than I am). After thyroid ablation in 2009, I couldn’t eat as much as I used to – I didn’t diet, my body simply got full quicker and wasn’t hungry all the time anymore.

In 2012, while trying to cure what ails me, I stopped eating gluten. It never occurred to me that it would be permanent, but it seems it might be. It didn’t change how I felt one bit, but, after talking to numerous doctors and reading this book, it seems like it would behoove me to continue to avoid it – if not for ME, then for my (other) autoimmune conditions.

Soon after that, I had blood tests done that showed allergies to cod, tomato and egg. Giving up cod was no problem, tomatoes and eggs almost killed me. But, I thought, what if? So, I stuck with it and it’s now been a year and a half and, you guessed it, I felt no change.

When I started seeing the Good Doctor last year, she put me on a diet for autoimmune conditions which, she said, resembled most anti-inflammatory regimens. I stopped eating all grains but oats, all legumes, dairy and starchy veg. I cut down on sugar, I stopped eating processed foods, I stopped drinking sodas – even “healthy” stevia ones, even flavored fizzy water. I stopped chewing chewing gum, stopped eating lozenges with colourings. Although I missed all of these things, it was similar to anaphylaxis – I felt like I was (am) dying and would do anything to improve my situation, so the choice was easy. I stuck with this protocol for almost a year and… Felt no different.

This past August, my doctor switched me to a more “traditional” elimination diet. I was allowed to add back grains (except corn) and legumes (except peanuts) but stopped eating red meat, pork, processed meats, shellfish, soy, citrus, and most forms of sweetness: honey, maple syrup, agave nectar, and, obviously, sugar. This was only meant to last for three weeks before tackling challenges, but I took a turn for the worse with my symptoms and doing food challenges showed nothing definitive, so I’ve kept everything eliminated. Compounding this restriction was my low energy and my husband’s overwhelmedness with the changing shopping rules, so neither of us got out of the habits formed over the last year. I joyfully started eating rice again, but didn’t really explore other grains or legumes. Once you’ve been doing something for a long time, it seems a monumental effort to change.

When I saw the Good Doctor again at the beginning of this month, she wanted me to continue this elimination for three more weeks, while making a concerted effort to detoxify my liver because she is thinking of testing me for heavy metal toxicity and, if necessary, going through a chelation protocol. Specifically, what she told me to do was:

  • EAT FOODS TO IMPROVE LIVER DETOXIFICATION:
    • Cruciferous vegetables (broccoli, brussels sprouts, cabbage, cauliflower, watercress)
    • Kale
    • Swiss Chard
    • Collard greens
    • Garlic, onions
    • Grapes
    • Berries
    • Green and black teas
    • Herbs and spices such as rosemary, basil, turmeric, cumin, poppy seeds, black pepper, and lots of cilantro!
  • Metagenics Ultraclear formula: drink one shake each day (she already has me taking their probiotics and I get a patient discount).
  • Supplements [I am very happy to be taking vitamins again. I stopped all supplements and vitamins 3 months ago and never intended to stay off of them for so long. I’m eager to add more (CoQ10, Acetyl-l-carnitine etc.), but she is making me take things slow.]:
    • Vitamin D
    • Vitamin B6 & B2
    • Biotin
    • Glutamine
    • Zinc
  • Green detox soup[I said yuck to this soup because I thought it sounded like a warm green smoothie and I thought I didn’t like fennel, but it turns out it is SO DELICIOUS and I like to have some every day.]

This soup is a gift to your liver to help it with its critical role in cleansing and filtering the blood. Sulfur-containing foods, such as onions and garlic, will keep your glutathione levels and antioxidant power high. Cruciferous vegetables are great for all your detox pathways, especially estrogen. Enjoy this soup for breakfast, as a snack or any time of the day. You can make a big batch and freeze it in small containers.

Makes 4-6 servings

1 tbsp extra virgin coconut oil or olive oil
1 small onion, diced
1 tsp minced ginger
2 cloves garlic, minced
1 celery stalk, chopped
3 cups chopped broccoli, florets and stems
1/2 head fennel, chopped
1 tsp salt
3 cups water
1/8 tsp freshly ground pepper

Heat the oil in a medium pot on medium high heat. Add the onion and ginger and cook until onion is translucent. Add the garlic, celery, broccoli, and fennel and a generous pinch of salt and continue to cook another 2 minutes. Add the water, remaining salt and pepper. Bring to a boil, then cover, reduce the heat, and simmer for 20 minutes. Place the soup in a blender and blend until smooth and creamy. Adjust salt.

Now the fun part: I haven’t been eating the chard, onions, grapes and berries she instructed me to because I am experimenting with a low-histamine diet. I am always trying to link seemingly unrelated conditions from my past to what is happening to me now. Just like I thought (think) dysautonomia explained not only my symptoms now, but issues I had pre-ME like Raynaud’s and fainting, I started to seriously look into histamine intolerance (HI) and mast cell activation disorders (MCAD). The swelling, the idiopathic anaphylaxis (which happened more often than not during my period), the alcohol intolerance, the dysmenorrhea, the hypotension and syncope (which happened more often than not during my period)… All of this makes sense in the context of a histamine problem. I used to wrack my brain and research incessantly to try to figure out why I was going into anaphylaxis but they could find nothing to which I was allergic. Was it the alcohol? Was it my period? Was it garlic? Was it ibuprofen?

When the allergist explained autoimmune urticaria and angioedema to me, he said the rashes I got during anaphylaxis and the swelling I’ve always experienced were the same mechanism in the body, just in different dermal layers. He said they are caused by tissue permeability and leakage and any vasodilator, such as alcohol, will potentiate the problem.. To demonstrate the autoimmune process, he injected me with my own plasma and I had a reaction on my forearm similar to the histamine control. He said these episodes could be brought on by emotional turmoil or stress and there is nothing to be done but take antihistamines. I counted myself lucky because some people have horrible chronic urticaria (I really recommend the film, Fat, Sick & Nearly Dead).

The more I researched histamine issues, however, the more I realized that my allergist, like all doctors, is limited by what he doesn’t know and what science hasn’t discovered. I asked my GP, the Good Doctor and my new environmental doctor about testing for MCAD and every one of them said they don’t know how. It turns out there really aren’t good tests, but they didn’t know this ~ they didn’t know anything about it!

I am going to continue the info about my low-histamine diet experience in Part 2 of this diet post (as well as all the other crazy elimination diets I’ve been researching: ketogenic, alkaline, low-salicylate, migraine) because there is a lot of information. But I’m giving you homework, if you’re interested in this topic at all: Listen to Yasmina Ykelenstam’s (The Low Histamine Chef) interview with Dr. Janice Joneja. There are 2 parts, but the first part is the most important. Get comfy because it is 49 minutes long and have a paper and pen ready. I’m telling you, it’s worth it. Dr. Joneja is so clear and knowledgeable.

Until next time…

Some New York Times Articles For You

I’m in what feels like a total free fall, so here are some interesting NY Times articles to keep you entertained while I’m unable to write: The Claim: Fibromyalgia Is Affected by WeatherHow Accurate Are Fitness Trackers?Don’t Take Your VitaminsResearchers Find Biological Evidence of Gulf War Illnesses. The latter has many quotes that we will all find familiar:

“After leaving the Army in 1992, he said his health continued to deteriorate, to the point where he could not hold jobs. Doctors gave him diagnoses of migraines, fibromyalgia, irritable bowel syndrome and chronic fatigue syndrome. They gave him medications that did not seem to help and offered treatment for post-traumatic stress disorder, he said. ‘I was told I had these problems because I was depressed. And yes, I was depressed,’ Mr. Brown said. ‘But that’s part of having so many things wrong. That’s not what caused it.'”

Really? The Claim: Fibromyalgia Is Affected by Weather

By ANAHAD O’CONNOR

JUNE 10, 2013

THE FACTS

No one really knows precisely what causes the debilitating fatigue and muscle pain of fibromyalgia. But some people who have the disorder say they know what can make it worse: changes in the weather.

Cold, damp days and drops in barometric pressure are widely associated with flare-ups in symptoms of the condition, which affects mostly women. In one study by the National Fibromyalgia Association, people with the condition ranked weather changes as one of the leading aggravating influences on pain and stiffness.

Unlike the reported connection between arthritis and changes in temperature and pressure – which has mostly been debunked – the belief that fibromyalgia symptoms fluctuate with the weather has not been the subject of thorough research. The few studies that have investigated ithave mostly found little evidence of a link.

In the latest report, published this month in the journal Arthritis Care & Research, Dutch researchers followed 333 middle-aged women who had fibromyalgia, looking for relationships between environmental conditions and their levels of pain and fatigue. Over the course of a month, the researchers monitored humidity levels, atmospheric pressure, precipitation, temperature and sunshine duration, using data from a meteorological institute.

In some cases, they did find that weather variables had “significant but small” effects on pain and fatigue. But for the most part, they concluded, there was “more evidence against than in support of a uniform influence of weather on daily pain and fatigue.”

THE BOTTOM LINE

Most studies have not found much evidence of a link between fibromyalgia symptoms and weather patterns.

How Accurate Are Fitness Trackers?

By GRETCHEN REYNOLDS

JUNE 12, 2013

Nate Meckes recognized that he needed to study the accuracy of activity monitors after wearing one. A shipment of the devices, known technically as accelerometers and designed to measure a person’s movement and energy expenditure, had arrived at Arizona State University, where Dr. Meckes was a researcher. To ensure they were operational, he slipped one over his hip and wore it throughout the day, including to an interminable meeting where he stood up and paced. “I’m not good at sitting still,” he says.

Checking his monitor afterward, though, he was flabbergasted. “It had recorded that I was not moving at all,” says Dr. Meckes, now an assistant professor at Azusa Pacific University in Azusa, Calif. The experience inspired him to set up an experiment examining how reliable such devices are.

Until recently, accelerometers, which use electronics to determine bodily movement and intensity, had been confined to research laboratories. But now, at-home users can choose from a variety of devices, sold under such brand names as Fitbit and Nike+ FuelBand. Some are worn on the hip; others on the arm or wrist. All sense movement and feed data into the device’s electronic brain, where proprietary equations determine how much energy someone is expending, meaning, in practical terms, how many calories they burn.

But by and large, users have had to take such measurements on faith. Unbiased, comparative studies of the devices haven’t been available.

Which makes Dr. Meckes’s experiment useful and timely, particularly since his results, presented last month in Indianapolis at the annual meeting of the American College of Sports Medicine, join those of a number of other new studies in raising concerns about just how well today’s activity monitors do their job.

For his experiment, Dr. Meckes gathered 16 adult volunteers and fitted each with three different monitors, two worn on the hip and one around the arm. The volunteers also donned portable masks that measure oxygen consumption, the gold standard in determining energy output.

The volunteers then threw themselves into a variety of activities in the university’s physiology lab, including walking on a treadmill, cleaning a simulated kitchen, standing up, typing at a computer and playing a board game.

All three of the devices accurately measured energy expenditure when the volunteers walked briskly, Dr. Meckes and his colleagues found; their estimates closely matched those of the oxygen-consumption monitor.

But the devices were far less reliable in tracking the energy costs of light-intensity activities like standing or cleaning, often misinterpreting them as physical immobility. Only the calorie cost of typing was overestimated, and only by the armband monitor, which considered the arm movements involved to be far more dynamic than they actually are.

These miscalculations echo those of the findings from several other new studies. One, also reported at the sports medicine meeting, involved 74 adults, young and old, who wore an armband accelerometer and a portable oxygen-consumption gauge while walking, jogging, riding a stationary bicycle, windmilling an arm ergometer, and completing so-called activities of daily living, like lifting boxes and sweeping.

Again, the accelerometer measured the more strenuous bodily movements, like jogging, fairly accurately. But it significantly underestimated subtler activities, like sweeping, and was “terrible” at measuring bicycle pedaling, which involves no arm movement, says Glenn Gaesser, the director of the Healthy Lifestyles Research Center at Arizona State University in Phoenix, who oversaw the study.

So, too, a study published last month in Medicine & Science in Sports & Exercise found that several hip-mounted accelerometers underestimated the energy involved in standing up, bicycling and walking or jogging uphill, says Ray Browning, an assistant professor of exercise science at Colorado State University in Fort Collins, who led the study.

The question, of course, is whether it matters if the devices are inaccurate, especially if they underestimate daily energy expenditure, and perhaps fiendishly spur some at-home users to move more, thinking that they’ve expended less energy than they actually have.

The studies’ researchers think the inaccuracies do matter. “There’s a growing consensus” among exercise scientists, Dr. Meckes says, “that people should spend less time in sedentary activities, like sitting,” and instead stand up, stroll or sweep more. But if people get the idea from their activity monitors that such activities don’t really count, in terms of movement and calorie expenditure, “it may be harder to get that message across,” he says.

The good news is that accelerometers are improving, Dr. Browning says. The algorithms underlying the devices’ measurements — which are developed by engineers using data from people wearing the devices — are constantly being refined. And researchers, including Dr. Browning, are exploring better monitor placement.

At Colorado State, for instance, he and his colleagues have created a prototype shoe-based accelerometer, which embeds the electronics in an insole. In his recent study, this device better captured changes in posture and foot pressure than hip-level accelerometers.

Still, the lesson at the moment for anyone who owns an accelerometer is that the device’s measurements are likely to be imperfect — which, says Dr. Gaesser, does not mean you should stash yours in a drawer. “They may not be accurate” for counting calories, he says. “But for many people, they’re inspirational, and if using one gets someone to move more, then as far as I’m concerned, it’s serving a good purpose.”

Don’t Take Your Vitamins

By PAUL A. OFFIT

June 8, 2013

PHILADELPHIA — LAST month, Katy Perry shared her secret to good health with her 37 million followers on Twitter. “I’m all about that supplement & vitamin LYFE!” the pop star wrote, posting a snapshot of herself holding up three large bags of pills. There is one disturbing fact about vitamins, however, that Katy didn’t mention.

Derived from “vita,” meaning life in Latin, vitamins are necessary to convert food into energy. When people don’t get enough vitamins, they suffer diseases like scurvy and rickets. The question isn’t whether people need vitamins. They do. The questions are how much do they need, and do they get enough in foods?

Nutrition experts argue that people need only the recommended daily allowance — the amount of vitamins found in a routine diet. Vitamin manufacturers argue that a regular diet doesn’t contain enough vitamins, and that more is better. Most people assume that, at the very least, excess vitamins can’t do any harm. It turns out, however, that scientists have known for years that large quantities of supplemental vitamins can be quite harmful indeed.

In a study published in The New England Journal of Medicine in 1994, 29,000 Finnish men, all smokers, had been given daily vitamin E, beta carotene, both or a placebo. The study found that those who had taken beta carotene for five to eight years were more likely to die from lung cancer or heart disease.

Two years later the same journal published another study on vitamin supplements. In it, 18,000 people who were at an increased risk of lung cancer because of asbestos exposure or smoking received a combination of vitamin A and beta carotene, or a placebo. Investigators stopped the study when they found that the risk of death from lung cancer for those who took the vitamins was 46 percent higher.

Then, in 2004, a review of 14 randomized trials for the Cochrane Database found that the supplemental vitamins A, C, E and beta carotene, and a mineral, selenium, taken to prevent intestinal cancers, actually increased mortality.

Another review, published in 2005 in the Annals of Internal Medicine, found that in 19 trials of nearly 136,000 people, supplemental vitamin E increased mortality. Also that year, a study of people with vascular disease or diabetes found that vitamin E increased the risk of heart failure. And in 2011, a study published in the Journal of the American Medical Association tied vitamin E supplements to an increased risk of prostate cancer.

Finally, last year, a Cochrane review found that “beta carotene and vitamin E seem to increase mortality, and so may higher doses of vitamin A.”

What explains this connection between supplemental vitamins and increased rates of cancer and mortality? The key word is antioxidants.

Antioxidation vs. oxidation has been billed as a contest between good and evil. It takes place in cellular organelles called mitochondria, where the body converts food to energy — a process that requires oxygen (oxidation). One consequence of oxidation is the generation of atomic scavengers called free radicals (evil). Free radicals can damage DNA, cell membranes and the lining of arteries; not surprisingly, they’ve been linked to aging, cancer and heart disease.

To neutralize free radicals, the body makes antioxidants (good). Antioxidants can also be found in fruits and vegetables, specifically in selenium, beta carotene and vitamins A, C and E. Some studies have shown that people who eat more fruits and vegetables have a lower incidence of cancer and heart disease and live longer. The logic is obvious. If fruits and vegetables contain antioxidants, and people who eat fruits and vegetables are healthier, then people who take supplemental antioxidants should also be healthier. It hasn’t worked out that way.

The likely explanation is that free radicals aren’t as evil as advertised. (In fact, people need them to kill bacteria and eliminate new cancer cells.) And when people take large doses of antioxidants in the form of supplemental vitamins, the balance between free radical production and destruction might tip too much in one direction, causing an unnatural state where the immune system is less able to kill harmful invaders. Researchers call this the antioxidant paradox.

Because studies of large doses of supplemental antioxidants haven’t clearly supported their use, respected organizations responsible for the public’s health do not recommend them for otherwise healthy people.

So why don’t we know about this? Why haven’t Food and Drug Administration officials made sure we are aware of the dangers? The answer is, they can’t.

In December 1972, concerned that people were consuming larger and larger quantities of vitamins, the F.D.A. announced a plan to regulate vitamin supplements containing more than 150 percent of the recommended daily allowance. Vitamin makers would now have to prove that these “megavitamins” were safe before selling them. Not surprisingly, the vitamin industry saw this as a threat, and set out to destroy the bill. In the end, it did far more than that.

Industry executives recruited William Proxmire, a Democratic senator from Wisconsin, to introduce a bill preventing the F.D.A. from regulating megavitamins. On Aug. 14, 1974, the hearing began.

Speaking in support of F.D.A. regulation was Marsha Cohen, a lawyer with the Consumers Union. Setting eight cantaloupes in front of her, she said, “You would need to eat eight cantaloupes — a good source of vitamin C — to take in barely 1,000 milligrams of vitamin C. But just these two little pills, easy to swallow, contain the same amount.” She warned that if the legislation passed, “one tablet would contain as much vitamin C as all of these cantaloupes, or even twice, thrice or 20 times that amount. And there would be no protective satiety level.” Ms. Cohen was pointing out the industry’s Achilles’ heel: ingesting large quantities of vitamins is unnatural, the opposite of what manufacturers were promoting.

A little more than a month later, Mr. Proxmire’s bill passed by a vote of 81 to 10. In 1976, it became law. Decades later, Peter Barton Hutt, chief counsel to the F.D.A., wrote that “it was the most humiliating defeat” in the agency’s history.

As a result, consumers don’t know that taking megavitamins could increase their risk of cancer and heart disease and shorten their lives; they don’t know that they have been suffering too much of a good thing for too long.

Researchers Find Biological Evidence of Gulf War Illnesses

By JAMES DAO

June 14, 2013

In the two decades since the 1991 Persian Gulf war, medical researchers have struggled to explain a mysterious amalgam of problems in thousands of gulf war veterans, including joint pain, physical malaise and gastrointestinal disorders. In some medical circles, the symptoms were thought to be psychological, the result of combat stress.

But recent research is bolstering the view that the symptoms, known collectively as gulf war illness, are fundamentally biological in nature. In the latest example, researchers at Georgetown University say they have found neurological damage in gulf war veterans reporting symptoms of the disease.

Using magnetic resonance imaging to study the brains of gulf war veterans before and after exercise, the researchers discovered evidence of damage in parts of their brains associated with heart rate and pain. Such damage was not evident in the control group, which included nonveterans and healthy veterans.

Such neurological damage, the researchers theorize, caused the veterans to be more sensitive to pain, to feel easily fatigued and to experience loss of short-term “working memory,” all symptoms associated with gulf war illness.

Their study, published by the online medical journal PLoS One on Friday, does not try to explain the causes of the damage. It also found different patterns of damage in two groups of veterans, indicating that the disease — if it is indeed a single ailment — takes different paths in different people.

But the authors said the findings, along with other recent research, may offer clues in developing treatments and diagnostic tests for the illness, which currently is diagnosed through self-reported symptoms and has no definitive treatment.

Two other studies released by Georgetown this year have also pointed to neurological damage in the brains of veterans reporting symptoms of gulf war illness, including one that showed abnormalities in the nerve cells linking parts of the brain involved in processing feelings of pain and fatigue.

The research makes clear that “gulf war illness is real,” said Rakib U. Rayhan, the principal author of the new study. “There is objective evidence that something is wrong in the brains of these veterans.”

Other experts offered more tempered views, noting that most of the subjects in the Georgetown study were self-selected and that their number was relatively small: 28 veterans with symptoms and 10 participants without symptoms.

Dr. Drew A. Helmer, director of the Department of Veterans Affairs’War-Related Illness and Injury Study Center in New Jersey, called the Georgetown studies “very preliminary” but also “a very important step forward.”

But Dr. John Bailar, an emeritus professor at the University of Chicago who led a group that studied gulf war illness in 1996, said the new study did not provide enough data to determine whether the veterans’ symptoms were linked to their deployments to Kuwait, or something entirely different.

“I am not questioning whether a substantial proportion of veterans of Desert Storm have symptoms related to their service,” Dr. Bailar said in an e-mail. “I am questioning whether those symptoms have any cause other than the stress of war itself.”

Studies by the Department of Veterans Affairs have estimated that as many as 250,000 of the nearly 700,000 service members who served in the Middle East in 1990 and 1991 have reported symptoms of gulf war illness, which is also known as chronic multisymptom illness.

Gulf war illness has been the source of much frustration and dispute practically since veterans first reported symptoms in the 1990s. Many veterans say that their complaints were initially dismissed as psychological. Many also believe that their problems are the result of exposure to nerve agents, pesticides, herbicides and other chemicals, but that the government has been slow, or unwilling, to pinpoint causes.

Even some government researchers have made that case. At a Congressional hearing in March, Dr. Steven S. Coughlin, an epidemiologist who once worked for the Department of Veterans Affairs, asserted that the department had systematically played down the neurological basis of gulf war illness. At the same hearing, a member of an advisory panel to the department said the agency still seemed guided by the view that symptoms of gulf war illness were stress-induced.

“This is a throwback to early speculation from the 1990s that there was no problem, or that veterans just had random, disconnected symptoms,” testified Dr. Lea Steele, a Baylor University epidemiologist who was a member of the Research Advisory Committee on Gulf War Veterans’ Illnesses.

USA Today reported on Friday that Eric K. Shinseki, the secretary of veterans affairs, had taken steps to replace members of the advisory committee and reduce its independence. Advocates for gulf war veterans say the changes are meant to rein in a committee that has consistently been more aggressive than the department in saying that gulf war illness is a physical condition related to exposure to toxins.

In a statement, the department defended its research into gulf war illness. “V.A. is clear in its commitment to treating these health issues and does not endorse the notion some have put forward that these physical health symptoms experienced by gulf war veterans arise as a result of PTSD or other mental health issues from military service,” the statement said, referring to post-traumatic stress disorder.

Still, many veterans, like Ronald Brown, who was part of the Georgetown study, say their problems after returning from Kuwait in 1991 were not taken seriously.

An infantryman with the 82nd Airborne Division, he was at a base in southern Iraq when engineers destroyed the nearby Kamisiya ammunition depot containing nerve gas. The Pentagon has said that as many as 100,000 American troops could have been exposed to the toxic gas in that demolition.

Mr. Brown, 45, says that before the invasion, he was in top physical condition, regularly scoring high on Army physical fitness tests. But after Kamisiya was destroyed, he began experiencing headaches, nausea and shortness of breath. When he returned to the United States, he says he failed a fitness test badly. “I plain and simple couldn’t get enough air,” he said.

After leaving the Army in 1992, he said his health continued to deteriorate, to the point where he could not hold jobs. Doctors gave him diagnoses of migraines, fibromyalgia, irritable bowel syndrome and chronic fatigue syndrome. They gave him medications that did not seem to help and offered treatment for post-traumatic stress disorder, he said.

“I was told I had these problems because I was depressed. And yes, I was depressed,” Mr. Brown said. “But that’s part of having so many things wrong. That’s not what caused it.”