Topical Steroid for LS – Week 2

It’s been two weeks since I started using Halobetasol, a topical steroid ointment, to treat Lichen Sclerosus (LS).   I was told by my gynecologist to use it twice a day for 1 month, then once a day for a month, then every other day, and eventually twice a week for the rest of my life.  I’ve been learning a lot more about LS over the past week.  This video by Andrew Goldstein, M.D. is excellent (but be aware it contains pictures of female anatomy and surgery, which are not appropriate for all audiences):

Lichen Sclerosus: The Unspoken Pain from Charles Runels, MD on Vimeo.

This doc seems to specialize in LS – or at least knows a lot about it – and says that before applying the steroid ointment you should be soaking the area in water for 15-20 minutes to soften the top layer of the skin so the medication can penetrate to the lower layers that actually need it.  So just yesterday I started twice-daily baths.  A little inconvenient, but we do what we have to do.

My overall health continues to improve.  I’ve now lost 22 pounds since the end of January.  Yesterday I ate a hot dog (nitrate free) and some potato chips (Boulder Canyon, made with coconut oil) – and still down a pound today, which would not have been the case before taking the steroid.  Take a look at my fasting blood sugar:

fbg

It seems to be recovering much more quickly since starting the steroid.  It’s now in the 90s, down from 150s and 160s in January.  Looks like walking lots of steps didn’t do me any favors, at least not with regard to fasting blood glucose – maybe it helped with post-prandial glucose, but I wasn’t testing that.

All of this leads me to believe that inflammation is at the root of my obesity and diabetes.  Not “food reward”.  Not gluttony.  Not laziness.  Inflammation.  Brought on by an autoimmune disease I had never heard of a month ago.   And what brought that on?  That is still to be determined.

So stop picking on fat people, world!  Fat is not a character flaw.  It’s a symptom.

Just checked my blood pressure – 131/80.  Not bad, but not good enough to get off another medication yet.

LS – 3 Weeks Later, and Current hs-CRP

Just a heads up…some talk about female anatomy today.

I decided to adopt the correct spelling of my new disease (LS) – Lichen SclerosUS.  Not SclerosIS.  I’ve been learning quite a bit about this beast. Do you know that this disease can cause a woman to completely lose access to parts of her sexual anatomy?  The body, in it’s autoimmune wisdom, decides to build plaques that cover the clitoris, narrow the vagina, and thin the skin, making sex painful.  Sometimes the urethra even gets covered and surgery has to be performed so you can pee.  Holy crap!  The standard first line treatment for LS is steroid cream or ointment – specifically Clobetasol, which my insurance company doesn’t cover.  From what I understand the steroid doesn’t reverse damage (plaques) that are already there, but it can stop new ones from being formed. If you already have them, you’re stuck with them unless you have some kind of surgery to remove them.  I don’t seem to have lots of plaques interfering with things – I guess mine was caught before a lot of damage was done.

It took a couple weeks for the doctor, insurance company and pharmacy to all put their heads together and figure out what medication I should be taking.  So a week ago I started taking Halobetasol – a cousin of the Clobetasol – which is covered by my insurance, so a tube is only $36 – quite the difference from the $300 I was quoted for the “Clob”.  I started taking it last Saturday.  The itching stopped immediately and hasn’t returned.  It had been minor but annoying, and now gone.  By Tuesday I was feeling really good – like even better than usual.  I couldn’t figure out why…then it occurred to me I’m now taking a steroid.  I love steroids!   So I was feeling great since January because of the Culturelle Probiotics, and now I’m feeling great PLUS.

I was concerned that the steroid ointment would make me gain weight…cuz you know, that’s what happens to people who take steroids like Prednisone.  Turns out the opposite has been true.  I now seem to be able to eat things that before would make me gain and hold onto weight.  For example, eating a hot dog – even a high-quality, grass fed, nitrate free one – would previously result in an increase on the scale for a few days.  Same with any kind of aged cheese, a few potato chips or crackers – basically anything other than what has become my standard diet of chicken, white rice, fruits, vegetables, and Daisy cottage cheese.  This diet has been very hard to stick with, but I’ve done it 95% of the time because I’m determined to shed weight and get off my blood pressure meds.  Anyway, calories didn’t matter much – I could substitute in something equal in calories and I’d still gain.  My weight loss had slowed to about a pound a week (I know, not too bad).

But since I started using the steroid cream for LS I’ve been able to eat things outside my normal pattern and continue to lose weight.  As of this morning I’ve lost 20 pounds since January – two of those pounds were in the past week, after eating a wider variety of foods that would have stalled my weight loss a couple weeks ago.  I’ve had a couple of hot dogs, some coconut oil potato chips, salad with ceasar dressing – all of these things would have been resulted in a stall or weight gain in the past.

Why would this be?  I’m guessing that inflammation keeps me fat.  And eating things that contribute to inflammation, even a little, cause an increase in stress hormones and shut off my body’s ability to burn fat.  I’m sure there’s a biochemical explanation for this that actually makes sense but I don’t have time to research it right now.  I’ve stopped counting calories and following weight watchers at this point – I just listen to hunger cues and eat till I’m no longer thinking about food.

Oh – I almost forgot!  Before I started the steroid I ordered testing for highly-sensitive C-Reactive Protein (hs-CRP).  I wanted to know if my systemic inflammation had dropped at all since my gut became happy on Culturelle, and didn’t want the results confounded by the steroid ointment I was about to start.  If you’ll recall, I have a long history of high readings on this lab test:

lab

My results this week:  8.0

My inflammation did not drop AT ALL as a result of the probiotic.  So this probiotic that completely removed my depression and returned my quality of life 100 times over has resulted in NO CHANGE in my overall level of inflammation.

That makes me wonder if maybe the LS – or whatever is driving the LS (Lyme?) – is really at the root of my high inflammation.  It seems the gut thing was just an additional problem, but wasn’t actually causing inflammation.  (My brain would disagree, but whatever.)

There’s some evidence of a direct relationship between LS and Lyme Disease (h/t to Susie for bring this to my attention!).  I’ve been pressed for time to research this fully but here is one article discussing a possible relationship between LS and the Borellia (Lyme) bacteria. I plan on getting tested for Lyme, and will be discussing this with my functional medicine doc in a couple of weeks.   I don’t have a lot of the other symptoms, but I’m determined to get at the root of whatever inflammatory process is running my biology right now.  From what I understand, standard Western Blot/ELISA tests for Lyme have lots of false negatives, and the IgeneX test is more sensitive, so that’s the one I’ll ask for.

It’s so amazing to be feeling better.  I don’t know how I managed to do all I did for so many years, feeling so tired and sad.  I wish I could help other people find their way out of depression, but honestly I don’t know if my path would help anyone else.  All I can say is this: keep looking for answers.

Lichen Sclerosis

I learned yesterday that I have (probably) developed an autoimmune (?) condition called Lichen Sclerosis (LS). Actually, annoyingly, it’s spelled “Sclerosus” which just looks wrong to me, so I’m spelling it the way half the internet does instead – “Sclerosis”.  Anyway, I went to the gynecologist for a typical well-woman visit, and come out with something new to worry learn about.

It’s a disorder that affects the skin of the genital area, causing pain and itching, and which can lead to psoriasis-like scaly patches and thinning skin.  Now, I don’t like talking about TMI on here – it just makes me feel weird – and this comes close.  So I’m not going to.  I will, however, complain about the price of the medication (steroid cream) to treat it.  $300!  My insurance is refusing to pay for it…so hopefully the doc will authorize a generic substitute.  I checked my insurance formulary and even the generic is outrageous, but is likely to cost me $50.  Doc says the LS is not something that will go away, and that I’ll be “managing” it the rest of my life.

So the first thing I do, of course, is find a Facebook group where I can get the REAL scoop on this from the experts – the people who actually have this problem.  Currently it’s not causing me any pain – just itching.  (I thought it was caused by histamine.  Nope.)  Looks like a lot of women are treating this with borax baths and cannabidiol oil (CBD).   It also appears to be at least somewhat correlated with other autoimmune conditions like hashimotos, which makes sense….once you have one you tend to collect more.  The interweb says that they’re not sure what causes LS, but because of this association with other AI conditions it’s assumed to be AI also.

So …what causes AI conditions?  Overactive immune system.

And what causes an overactive immune system?  A chronic infection.

Again, it all goes back to the gut…at least for me.

I feel like the inflammation from my gut is much better controlled now – my mood has been awesome or close to it for several months now, regardless of what I eat.  If I was a religious person I would say I’m blessed.  I do feel fortunate.  Still, the chronic inflammation from a nasty gut critter – for years – may have set the stage for autoimmunity.

A note about Culturelle Probiotics – and probably other probiotics, for that matter.  A few weeks ago I ordered several boxes from Amazon.  A few days into one of those boxes my mood started shifting back to being irritable and depressed.  This lasted 3 days – unheard of at this point for me.  At first I didn’t know why that was happening, and then I realized I had just opened a new box of Amazon-sourced probiotics.  I immediately switched to a box I had purchased locally at Walgreens, and my mood returned to awesome within a day.  This makes me think that maybe Amazon isn’t the best place to buy this or any probiotic supplement.  It would make sense that since we’re dealing with bacteria, freshness might be an issue…and really, we have no idea how long a supplement sits on a pallet at Amazon or in what temperature or conditions.  So a few days ago I changed all of the links on this blog for Culturelle so that they no longer direct to Amazon – now they direct to Vitacost.  Vitacost runs out of them now and then so I don’t think they keep a massive stock on hand.

So I learned a few things here.  Don’t get probiotics from Amazon…and also, I’m not cured.  Whatever is going on in my gut is being managed…but it’s not gone.

Stepbet

I finished my Stepbet – a 6-week walking challenge that involved betting $40 on my ability to walk a specific number of steps (which varies by person depending on baseline walking habits) over a 6-week period.  For me that number was an average of about 8,000 steps per day (7415 steps on “active” days and 9441 steps on “stretch” days), with one rest day.  The money you bet is pooled with about 700 other people doing the same thing.  The purpose of this is to gain incentive to move more.  After betting the $40 I had to complete the 6 days of walking with my fitbit syncing to their system as evidence, or lose the money.  Those who complete all of the walking during the challenge split the pot (after Stepbet takes their cut).

So I successfully completed my Stepbet challenge, which ended Sunday.  Got my $40 back plus $7.92.  Considering I spent about $5 on batteries for my fitbit, it was a wash financially.  I’m glad I did it though because it helped me stick to a walking program and see what that could do for me.

And what did it do for me?

My weight is lower now than it was when I started the walking program, but it became a struggle over the last few weeks:

Weight

I found that overall my appetite increased from walking.  I had a hard time some days managing this – I would walk 10,000 steps in a day and not plan adequately for the increase in appetite, and not bring enough food with me to work, and then be ravenous when I got home, and then overeat…this didn’t happen all the time, but enough that it destabilized my weight loss.  I can’t completely blame the stepping – the cravings and shifts in appetite might also be the result of just being on a lower-calorie low-fat diet for several months.  It will be interesting to see what happens over the next month, without the walking program.

The other thing I was hoping would improve from walking was my blood sugar numbers:

FBG

That didn’t improve.  Just stayed about the same over the 6 weeks.

I did gain a new appreciation for walking as a stress-relieving activity though.  I used to dislike walking because of the sausage-fingers factor, where blood pools in your fingers due to arm-swinging centrifugal force.  I found during my Stepbet that that doesn’t really happen if I was just walking at a normal pace.  After all, Stepbet rewarded me for total number of steps per day – not for getting my heart rate up or covering massive distance.  So I learned to shorten my stride a little and walk at a pace that wasn’t very strenuous.  Much more enjoyable than previous walking programs where I was out there pounding the pavement with great intention and exertion.

So overall a victory.  Information is power.  I’m going to take a break from the walking though.

Update

A few quick updates:

The Milk Thistle helped.  My hormonal (estrogen) symptoms are gone again, since I started taking it once a day in the morning.

My weight loss is stable but I’ve had to take a break from Weight Watchers (WW) for about a week (or two?).  I started having lots of cravings and trouble being satisfied with what I was eating.  Most people in my WW Facebook group blame themselves when this happens, assuming the diet must be right and they must be wrong to want to eat potato chips (or whatever).  The journey I’ve been on with this blog and in my life, however, has helped me to see that it’s NOT my lack of character, will power, motivation, determination, or any of the other -tion words, because I know I can stick to ANYTHING if it’s helping me.

I figured it’s probably a nutrient deficiency that’s causing the problem.  Considering I’ve been on a low-fat diet for 2 months, it could be either fat itself or a fat-soluble vitamin that’s probably lacking.  Since I take supplemental Vitamin A, Vitamin E, Vitamin D, and Vitamin K, I assumed it was the fat itself.  So I allowed myself a few days of eating whatever I wanted and the scale started climbing.  Back to low fat….nope, still not satisfying.

So then I remembered what Dave Asprey said about hormonal problems that cause one to regain lost weight (I talked about it here).  So to fix that hormonal problem I tried to do a few days of very low carb eating, the hypothesis being that it would “reset” that CCK hormone and reduce appetite.  Day 1 went fine.  Day 2 I felt like a zombie.  My coworker asked me if something was wrong with me – apparently I had been staring at her with a dazed look on my face.  I didn’t feel good either.  Came home and ate some watermelon and I was all better!  So probably didn’t reach ketosis, but made it 1.5 days.   Since then (that was 2 days ago), my cravings and appetite have dropped off again and I’m very happy with eating my regular high-carb/low fat WW diet…so maybe it worked!

Anyway, weight today is 196.7, a loss of about 15 pounds total so far.

Still having low-grade hot flashes – I blame the Verapamil I’m taking for hypertension.  Apparently it’s a histamine liberator. I’ve had so much trouble finding a medication that works and that doesn’t have unbearable side effects. I’m just focusing on getting well so I can eventually get off of it.  Interestingly, when I was doing the couple days of low-carb I was eating more meat (steak) and my hot flashes got much worse.  I think the histamine in the meat was a big problem. I don’t seem to have that problem with chicken – not sure why beef would be so much worse.

Milk Thistle

I’ve been slowly attempting to phase out my supplements one at a time as I run out of the bottles, the purpose being to see what I really need as opposed to what some expert told me I need.  Well, it turns out I actually need Milk Thistle.

I stopped taking it about a week and a half ago.  The bottle ran out and I didn’t buy another.  Over the past week I’ve had more emotional upheaval – not terrible, but definitely a change from the walking-on-a-cloud experience that I had been enjoying for weeks prior to this.

When I started having some emotional moments (mostly irritability, some anxiety), I didn’t recognize it at first because it had been awhile.  Then I remembered that last time I lost more than a few pounds of body fat I had the same experience.  It made sense to me that the burned fat may be releasing extra estrogen into my system and causing PMS-like symptoms.  I figured last time around (a few years ago) that dealing with the stored toxic crap was just the cost of losing weight.

But this time I wasn’t having any of these problems.  I noticed it a few weeks ago, and said to myself, “Huh…how come I’m not having any of that toxic estrogen release going on this time?”  …and I wasn’t…until I stopped taking Milk Thistle.  I never really saw the benefit to taking this before – I had read that it supports the liver but didn’t really know what that meant.  Well, I guess it means it helps the liver detox mass quantities of toxic estrogen when you lose weight!

I ran to the health-food store as soon as I realized this yesterday, and now I’m back on the thistle.  I look forward to walking on sunshine again soon.

Weight Loss Update

I’m down almost 16 pounds from my top weight on January 20th of 212.3.  At that time my BMI was 35.9 – in the morbidly obese range.  Now at 196.7 my BMI is 33.2 – Hey, I’m just obese now.  Yay!

Walking longer distances is becoming second nature now, thanks to Stepbet.  I’m 3 weeks into my 6 week walking challenge, averaging somewhere around 8000 steps per day to stay in the game.  My Dietbet challenge ended yesterday – I was one of the winners, though lots of other people won too so the payout was only $2.74 over the initial bet of $100.  Oh well – it really did motivate me to stick with my low-fat diet when I didn’t feel like it, so I have to say it’s a good tool if you’re able to lose weight.

And by the way – “…if you’re able to lose weight” is really an important qualifier.  I did two Dietbet challenges over the past couple of years that I lost because no amount of self-discipline was resulting in weight loss for me when I was all inflamed and could only eat meat and fat.  So actually I was in the hole about $150 prior to this most recent challenge.  I’m now in the process of climbing out of the Dietbet hole.  $2.74 cents at a time, apparently.

A note about Dietbet strategy that I’ve learned, having done this a few times.  Avoid the short-term high-stakes games.  The more each player is required to contribute, the more committed they are to the game, and the less likely your win is going to result in a windfall over and above your initial contribution.  (I know it’s uncool to care about money – I should just be happy I’m losing weight – but I find money motivating and this is my blog so I’m not gonna hide it.)  Yes, you’ll stick with it, and if sticking with it is your main goal then the high stakes games will give you the incentive to do that, but you won’t win much.

I can’t help but notice that what’s working for me right now is what mainstream medicine has been recommending all along – low fat, low/no added sugar (the “added” excludes fruit), reduced calorie, adequate fiber.  Hm….what does this mean?  Does it mean that maybe the premise of this blog – finding the hidden keys that Big Pharma and the USDA don’t want you to know – is just bunk?  I was here to de-bunk the diet industry.  Now I’m the one who’s been de-bunked.   I know a lot of people lose weight with low-carb – I did too for about 5 minutes – but it came back pretty quickly when my body got sick, and then low-carb wouldn’t work again for weight loss.  I suppose it’s not a black and white issue – there are more than 2 answers.  The key is finding the one that  you can live with and that works for you.

Speaking of learning what I can live with, I think one of the most important things I’ve learned in the last 2 months is to find things I actually like eating that support my goals.  I learned this while staring down a cantaloupe in my refrigerator.  I didn’t want to eat it, but there it was – healthy food that I had bought, waiting to be consumed.  I finally threw it out after getting honest about the fact that I just don’t like cantaloupe.  I decided that I don’t have to like or eat everything that’s healthy – I love grapes, watermelon, and apples.  So now that’s the fruit I eat.  I don’t love potatoes unless they’re bathed in butter, so I’m not eating those either – but I love rice so I’m eating Jasmine (unfortified) rice about 3 times a day.

My weight goes up when I eat cheese that contains vinegar or foods containing wheat.  I don’t know why – I have tested negative to intolerances to these foods – so this is just what’s so.  So gluten-free pretzels and Daisy cottage cheese are a thumbs up, but wheat pretzels and string cheese are a thumbs down.

My mood is generally awesome these days.  I have had some emotional instability break through occasionally.  I assume this is estrogen being released from fat cells as I lose weight, because it feels like PMS used to feel.  In general I feel great though – lots of energy, no aches or pains, great mood.  This has been going on long enough now that I have come to trust it as the new normal.  I am eternally grateful.

One Down, Two to Go

It appears I’ve successfully discontinued one of my three blood pressure medications.  At the beginning of February I was taking the following:

  • Hydrocholothiazide 25mg/day
  • Methyldopa 250mg 3x/day
  • Verapamil ER 120mg/day

I started the Verapamil on 1/12/17, after my weight had climbed due to unnecessary hydrocortisone use, and my blood pressure had climbed with it. I’ve now lost the hydrocortisone weight plus a few more pounds (down almost 13 pounds since starting Weight Watchers), and I decided a couple weeks ago to see what happens if I taper off the Methyldopa.  So I did, with my doctor’s blessing.  Blood pressure this morning was 130/86.

I suppose I’ll hold off on more changes till my weight drops some more.  I wasn’t sure the Methyldopa was actually doing anything, but I’m sure the remaining ones are.

Weight Watchers – 1 Month Review

I’ve been doing Weight Watchers for 4 weeks.

I’m allowed 30 “points” per day, plus an additional 35 points per week to use at my discretion (used to be 45 per week but I lost weight and they adjusted that down to match current intake needs).  Typically I eat all of my 30 points per day and most days I use none of the extra weekly points.  I see those as insurance, so I don’t feel guilty if I accidentally go over or if I’m just unusually hungry one day.

Here’s what I ate yesterday – this was exactly 30 points worth of food:

diet

Each time I enter my diet into Cronometer (only about 1x per week) I find that I’ve had between 1500 and 1800 calories per day, around 30g of fat, 225g carb, and 140g protein.  I seem to be eating the same things every day – I could really change it up a little I suppose.

Here’s the nutrient breakdown from what I ate yesterday (just the food, before any supplementation):

nutrition1

nutrition2

Some of the micro-nutrition is falling short, but when I add in my multivitamin, Vitamin D, Vitamin K, and magnesium supplements and the salt I add to food I’m up to meeting 95% of nutrition targets – but still lacking in calcium, potassium, and iron.  I’m not sure I care about the iron though.  I haven’t had my “cycle” in almost a year, so I’m now at risk of too much iron rather than not enough.  Calcium and potassium…hm…I should add some daily greens.  If I add a cup of cooked spinach I’m up to 98% of nutritional targets met.

So how are my other health markers?

I’m down an inch on my waist and my pants fit.  I threw out my yucky fat pants a couple days ago because they were falling off.

Here’s my fasting blood sugar:

fbg

I was hovering between 115 and 125 for a while there, and then has gone up since I started walking.  Weird!

Here’s my weight:

weight

I wrote a couple days ago that I got hungrier after I started walking.  That has evened out and I’m back to normal hunger/satiety again.

I was listening to Bulletproof Dave Asprey’s recent podcast with Dr. Sylvia Tara on the subject of fat.  In it Dave mentioned that there’s a hormonal response to losing weight that causes the near-inevitable regain later on.  I went to his blog to read more about it – on this subject, he says:

One of the reasons old-fashioned, calorie-restricted diets tend to fail is because these diets make you really hungry and cause food cravings.

Cutting calories to lose excess weight changes your hormones that control hunger and satiety so that after you starve yourself enough to lose some weight, your brain and gut start making your hormones work against you.[1],[2]

Your hormones scream, “eat more and gain that weight back!” So you do. And so begins a lifetime of yo-yo dieting, the one I used to live.

He goes on to talk about how ketosis can cause a hormonal change that “resets” the system to avoid the weight gain:

Your intestines release CCK after you eat, and it is a powerful regulator of food intake—so much so that injecting people with CCK (in a controlled study!) will cause them to cut their meals short.][4]

Your body secretes less CCK after you lose weight. In other words, when you are thinner, you will feel less sated with the same meal than you did before losing the weight. So you’ll crave more unhealthy foods. However, weight loss with ketosis keeps you from getting caught in this trap.

In fact, a recent study in the American Journal of Clinical Nutrition showed that even after 8 weeks of weight loss that resulted in significant reductions in CCK, just one week of ketosis returned CCK to baseline (pre-weight loss) levels.[4] In other words, even if you use famine-level calorie restriction to lose weight, you’d better pound the butter and cut carbs at the end unless you want to crave food all the time.

Personally I find what I’m doing now to be much more satisfying than a ketogenic diet.  I’m not sure what my blood markers look like right now – I might have triglycerides in the 500s – but I feel really good every day and I know I can have anything I really want and continue to lose as long as I cut back somewhere else.  I do plan on testing Dave’s assertion about ketosis though – as I get closer to my goal I’ll try a week or two of ketogenic eating and see if it makes it easier to avoid the regain.

Walking

I’ve increased my walking to between 7000 and 10,000 steps per day.  Since I did that about 3 days ago I’m hungrier.  It’s a little annoying.  I suppose I’ll stick with it though or else I’ll lose my $40 StepBet investment.  Also, exercise is supposedly good for you…you know, cuz science says.  So there’s that.  I haven’t seen further improvements with regard to weight loss or blood sugar management lately – Weight is around 201.5 and fasting blood glucose is hovering around 120.  I’ll be patient though.  Really.  I will.