Sunday, February 10, 2019

Brief Blog Hiatus

My "office" - recliner by the window & laptop!
Happy weekend, everyone! I should have written this post a week ago, but I am still struggling with computer problems, and I had a couple of crash days this week. I'm feeling better now, which is good because this week coming up is packed full of appointments, etc.

I wanted to let you know that I am taking a brief hiatus from this blog - probably about a month. I didn't want to just disappear without an explanation! The reason behind this little break is so that I can focus this month on the book I am working on, Effective Treatments for ME/CFS: Our Experiences. This book is based in part on what I have posted here on my blog, so much of the information is already available - but you have to look through 12 years of blog posts and follow a lot of links to find it all! My purpose in writing a book is to pull all of that information on treatments for ME/CFS - which are the most popular posts here - together in one place.

In the meantime, you can find much of this information already under the ME/CFS Treatments tab.
It is a summary of the treatments that have worked best for my sons and I over the years - we now function fairly well and live active lives again. Like I said, you will have to follow the links in that post to get all the details for each area of treatment, but it's all there! That page works like a roadmap to (almost) all of the treatment information on the blog. 

I've also written a few recent treatment posts that are not yet listed on that page, so you can check those out:
So, that should keep you busy while I'm working on the book!


Finally, I wanted to explain that I'm not actually disappearing, though I won't be writing new blog posts for a little while. I am active on Twitter and the Facebook page for this blog just about every day, and there are wonderful, warm, supportive communities in both places - I encourage you to check them out! I will also remain active in the Facebook groups that I manage (note that I do not "friend" people I don't know but rely on the Facebook page and groups for interacting with others with chronic illness). So, I'll still be around and happy to chat or answer questions that might come up!



Wednesday, January 30, 2019

Mast Cell Activation Syndrome (MCAS) and ME/CFS





While Mast Cell Activation Disease (MCAD) is a well-known but rare condition, doctors have only just recently discovered that a related condition, Mast Cell Activation Syndrome (MCAS) is actually very common and behind many unexplained medical problems. Since mast cells are a part of the immune system (involved in allergic reactions), doctors and other medical professionals are discovering that many patients with immune disorders, like ME/CFS or tick infections, which can affect the immune system, also have MCAS. Any kind of unexplained or new allergic-type reactions, rashes, pains, or weird symptoms that don't seem to fit anything else often point to MCAS.


The good news is that MCAS is often easily treated with readily available over-the-counter (OTC) medications and supplements. First-line treatments usually include OTC antihistamines and acid blockers, as well as other allergy treatments. Testing for MCAS is tricky because changes in the blood are often transient, so a single blood test may not catch them, but since the initial treatments are inexpensive and accessible, it can be worthwhile to try treating MCAS if your symptoms fit. Many of the parents in our Parents' support group have reported that their kids with ME/CFS, EDS, tick infections, and related conditions have responded well and improved with some simple MCAS treatments - some dramatically.

Below is a bit more detail on MCAS, its diagnosis, and its treatment. Most of what I've learned about it has been from the book Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity by Dr. Lawrence B. Afrin, M.D., one of the main doctors responsible for identifying MCAS. His book contains many case studies of widely varying patients, including some information on diagnosis and treatment options, with a lengthy glossary (view the book on Amazon at the link). I also learned about MCAS from a few websites and from other patients and medical professionals.

Our Story
Our registered dietician (who also has an MS in biochemistry and is brilliant about ME/CFS and related conditions) mentioned the possibility of MCAS to me several years ago, but I didn't pay much attention. Then, I began to hear other patients talking about it, with more and more people diagnosed with MCAS and improving with treatment for it. Finally, when both our ME/CFS specialist and our Lyme specialist mentioned it to us within a month's time, I decided it was time to follow-up on it.

I have had annoying-level allergies since we moved to Delaware in 1990 - mainly to molds and dust - and developed a dairy intolerance when I got ME/CFS (as do 30% of ME/CFS patients). My older son, who also has ME/CFS plus 3 tick infections, also developed a dairy intolerance with ME/CFS but otherwise has only mild allergies and seldom even needs to take OTC antihistamines...which is why I didn't pay attention the first few times I heard about MCAS. He and his brother (who is recovered from ME/CFS but has fairly severe allergies) had both started reacting to certain fruits in the past few years (a condition known as Oral Allergy Syndrome), but again, for our older son, it's been mild.

Then, last spring, he had a random, unexplained anaphylactic reaction one day after playing soccer. He does carry Epi-Pens due to a bee sting allergy, but he definitely had not been stung that day. When he felt his throat start to close up, he walked to the nearby Urgent Care clinic (luckily, very close by), and phoned my husband, who rushed over there. Luckily, with the quick response and some Bendaryl (an OTC antihistamine) and a dose of steroids, he responded and didn't need the Epi-Pens, though he was wiped out for days afterward. But we still couldn't explain why it had happened.

A couple of weeks later, we were at a check-up with his Lyme doctor and just mentioned the weird, still-unexplained anaphylactic reaction. Our Lyme doctor said that it sounded like a mast cell problem, and - finally - the light bulb went on for me! I started remembering all the disparate things I'd heard or read about MCAS and realized his strange reaction was a major sign. We took our ME/CFS specialist up on her offer to test us both for MCAS, and she ran a range of tests (see below, under diagnosis). Nothing showed up abnormal for me, but one test was way out of range for our son, so we began trying treatments. There hasn't been a huge change, but he did see a small improvement in his symptoms and how he felt overall. More importantly, he hasn't had another anaphylactic reaction since then, though he does still have a mild mouth-itching reaction to certain fruits. I didn't expect any major changes for me and didn't see any, though I do think it has helped to better control my allergies, which are ever-present.

Diagnosis
Diagnosis of MCAS is challenging. There are some blood tests that can be run, but none of them is foolproof - you can have perfectly "normal" results and still have MCAS. It is a condition that is mostly diagnosed clinically (that is, through symptoms, history, and physical exam), though lab tests might pick it up - very much like Lyme disease.


These lab tests (all for blood unless otherwise noted) might be helpful and can be requested to help determine if MCAS is present:
  • Tryptase
  • Chromogranin A
  • Histamine (plasma)
  • Immunoglobulin E (IgE)
  • IgE AB
  • Arginine Vasopressin
  • Osmolality (serum)
  • Osmolality (urine)
As I mentioned in the introduction, there are many problems with these tests. The tryptase test, for instance, has an inherent impracticality. It is most accurate when the blood sample is taken within 4 hours of the onset of a flare-up of symptoms...but few patients are able to get to a lab and get it tested in that timeframe. Other MCAS/MCAD testing requires a sample that is kept chilled - also difficult to ensure once it is shipped off to a lab somewhere.

For us, my tests were all normal, as were most of my son's, but his IgE levels were more than 6 times higher than the normal range. IgE are the antibodies produced by your immune system when you've been exposed to an allergen, so this was an unusual result for someone who rarely has typical allergy symptoms.

There are more accurate and more complicated tests for MCAD and MCAS, but they are typically beyond the knowledge of most doctors or laboratories to request and/or correctly run.

Since the testing doesn't always (or even often) pick up MCAS, doctors must rely mainly on symptoms. Classic signs of MCAS include:
  • Typical allergic symptoms, like wheezing, congestion, flushing, rashes, throat swelling, or anaphylaxis.
  • Symptoms that are unexplained by the patient's existing diagnoses.
  • Any odd, strange, bizarre, weird, or mysterious symptoms - Dr. Afrin even suggests looking for these kinds of words in a patient's medical file - have previous doctors used these kinds of descriptors for unexplained symptoms?
This is where the title of Dr. Afrin's book comes from. He explains that Occam's Razor tells us that a multitude of problems (especially unusual problems) in a single patient is far more likely to be due to a single root cause than to multiple causes.

Treatment
So, if you and your doctor suspect MCAS, based on symptoms and/or testing, the easiest way to confirm is not with more complex testing but to try some simple treatments.


First-line treatments for MCAS are usually various types of histamine blockers. There are four types of histamine receptors in the body:
  • H1 receptors, which cause much of what we typically think of as allergy symptoms and help to control our internal clocks.
  • H2 receptors are mainly located in the gastrointestinal tract, as well as the heart, uterus, and vascular smooth muscles.
  • H3 receptors are present throughout the nervous system and especially in the Central Nervous System.
  • H4 receptors have only been recently discovered and trigger the release of white blood cells from bone marrow.
So, accordingly, there are different types of histamine blockers you can try that might help with MCAS (note that I am using US brand names here; see this article for chemical names):
  • H1 blockers are typically sold as antihistamines, including all of the over-the-counter products, like the non-drowsy choices: Claritin, Allegra, Zyrtec, and Zyzal (a newer one). Benadryl is an effective H1 blocker but can cause drowsiness. You can easily buy these in any drugstore without a prescription. 
  • H2 blockers are usually sold over-the-counter as acid blockers, with brand names like Zantac, Pepcid AC, Tagamet and others. Dr. Afrin recommends using the maximum strength products and beginning with once daily, but you can increase to twice daily.
  • Ketotifen is an anti-inflammatory that is also an H1 blocker. It is not currently sold in the US commercially, but you can easily get it through a compounding pharmacy.
  • Some drugs used for other purposes also have antihistamine effects, including doxepin, all tricyclic antidepressants (which are often used in low doses to correct sleep dysfunction in ME/CFS), certain anti-nausea drugs, and the anti-psychotic quetiapine.
  • Cromolyn has mast cell stabilizing activity and is available as a nasal spray, eye drop, or in liquid form for oral use.
  • Quecertin is an herbal supplement with antihistamine effects, which is naturally occurring in some fruits and vegetables and tea.
Dr. Afrin's book covers other treatments, but these listed above are the most commonly used and readily available. He does sometimes use simple aspirin to treat MCAS (as one of several treatments), but it does have some potentially serious side effects when used regularly.

From this list, my son and I both take Zyrtec and Quecertin daily, as well as an acid blocker/H2 blocker. We started with Zantac and are currently trying Pepcid-AC, which brings up an important point - there is no way to predict which particular medication in a category will work for each individual. Everyone is different. So, some patients will respond well to Allegra, while other will have better success with Claritin or Zyrtec (and same with the H2 blockers and other categories) - it's a matter of trial and error. My son also takes ketotifen, 1mg daily, compounded. He tried the liquid Cromolyn, but it gave him diarrhea, though I have heard that it works well for other patients.

And that's the bottom line with treating MCAS...it comes down to trial and error, which means plenty of patience and persistence. You have to keep trying to find the combination of treatments that work best for you, and even within a single category, what works for you may not work as well for someone else.

Believe it or not, that's a brief summary! For more detailed information or to learn more about the science, check out the Mast Cell Action website or Dr. Afrin's book. MCAS is a complicated topic but one that is an exciting new development for many with immune disorders, including ME/CFS, and potentially a whole new avenue of treatments to try. We do think treating MCAS is helping our son, and I think it has helped to reduce my own allergy symptoms a bit more. I know of other patients who have improved dramatically with treatment for MCAS, so it is definitely worth looking into. Now, whenever someone tells me that they or their child has "a weird rash" or some other unexplained symptom, I always point them toward MCAS.

Have you looked into MCAS yet or tried any treatments for it? What has your experience been?

Tuesday, January 29, 2019

TV Tuesday: The Rookie

We don't watch a lot of police dramas, but when we saw that Nathan Fillion was going to be in a new one called The Rookie this fall, we gave it a try. We loved Fillion in Castle - and of course, also in Firefly - and we weren't disappointed in his latest role. The Rookie is a cop show, yes, but with plenty of drama and humor as well as action.

Fillion plays John Nolan, a rookie cop who is 40 years old. His life recently fell apart when he and his longtime wife divorced after their son went to college, and John decided to do something completely different from the construction work he'd done all his career. He moved to LA, graduated from the Police Academy, and is now an official rookie (or "boot" as the experienced cops call them) with the LAPD. His fellow rookies are Lucy Chen, played by Melissa O'Neil (whom we enjoyed in Dark Matter), and Jackson West, played by Titus Makin, Jr, whose father is in charge of Internal Affairs. In each episode, each rookie is teamed up with an experienced officer, and the two of them go out on patrol and encounter a wide variety of situations, from motor vehicle violations to domestic situations to gun-filled drug deals. Sergeant Wade Grey, played by Richard T. Jones, oversees the patrol officers, and Captain Zoe Anderson, played by Mercedes Mason, is in charge of the whole department. No one else knows it (yet), but John and Lucy have been seeing each other.

This is not your typical gritty police drama. Though the officers often run into challenging situations and danger, there is a lightness and sense of humor that runs throughout the show and makes it a whole lot of fun. That's not to say it doesn't sometimes delve into serious issues - like one officer's wife who used to be in Vice and is now a drug addict on the streets or when John is involved in the shooting of a civilian - but it always tackles these difficult topics with warmth and humanity. If you've seen Fillion in anything else, you know he plays the goofy, wise-cracking guy often (and well), and you see some of that here, too, though with a serious desire to become a good cop and a layer of sensitivity underneath, especially when it comes to Lucy or his son. There are plenty of jokes about the 40-year old rookie, but it's not a one-joke show - there is gentle humor woven throughout. The combination of police action, interpersonal drama, and humor is just right, and we have been loving the show since its premier in the fall. In fact, our 24-year old son was home sick last week and looking for something to watch, so I suggested The Rookie, and he binged all of the episodes!

The Rookie is currently airing on ABC at 10 pm Eastern time, and I know that all 11 of its episodes so far, back to episode 1 (#12 airs tonight) are available On Demand because my son just watched them all last week! They are all also available for free on the ABC website. You can also purchase The Rookie on Amazon for $1.99 an episode or $34.99 for the first season (looks like it will be 20 episodes total).



Thursday, January 24, 2019

Challenges in Treating Orthostatic Intolerance

Part 1 of this series covered Challenges in Diagnosing Orthostatic Intolerance. I apologize for the long delay in writing this second part on Challenges in Treating OI -  a bad crash last fall left me with only minimal writing energy for several months...but here it is now!

If you missed the first part or are new to the topic of Orthostatic Intolerance (OI), go back and read Part 1 and/or my overview post on Orthostatic Intolerance and ME/CFS. The bottom line is that if you have ME/CFS (and possibly if you have fibro, tick infections, or MCAS), then you do have some form of OI, where your body can not hold blood pressure and/or heart rate steady while upright. The good news is that treating OI can improve all symptoms - often dramatically - and treatments are quite cheap and readily available all over the world. Treating OI is what got my two young sons back to school full-time and even playing soccer again, and it is a big part of what allows me to be active again - I can now walk for up to about 90 minutes without crashing afterwards!

So, step 1 is to diagnose OI - for details on that, see my ProHealth article, Diagnosing Orthostatic Intolerance, and that previous post on Challenges in Diagnosing Orthostatic Intolerance. Once you have the diagnosis, then you can start trying treatments! My ProHealth article on Treating Orthostatic Intolerance outlines some of the most common treatments that usually help people with OI. However, as with diagnosis, there are some challenges to treatment, and too many people give up too easily the first time they hit a challenge.

Why Treat OI?
Why bother in the first place? Because, though most of us are unaware of it, OI is behind many of the symptoms we think of as ME/CFS - it contributes greatly to fatigue, pain, and brain fog. Most importantly, OI is a big part of exercise intolerance. Treat the OI, and you will greatly improve your ability to tolerate exertion without crashing! That is the piece that was life-changing for my sons and I and so many other people around the world. 

The tips below come from LOTS of experience - both our own and that of hundreds of other patients that we have helped get the treatments they need. Keep these things in mind as you embark on finding your own effective treatments for OI. You'll be glad you did!

Salt and Fluids Are Only the First Step
Many doctors recommend extra salt and fluids after diagnosing a patient with some type(s) of OI, and that is certainly very helpful, but it is only the first step in treating OI. Part of the reason behind why OI happens in ME/CFS and related conditions is low blood volume caused by endocrine dysfunction, and extra salt and fluids can help to increase your blood volume...but only by a small amount. Ingesting salt and fluids only has a minimal impact on blood volume, so while it's necessary, there are still hormonal abnormalities that prevent our bodies from holding onto those fluids, which is why we need extra help. For starters, though, extra salt and fluids will help, though you need more than just a bit of salty foods. Try these approaches:
  • Add extra salt to food (use sea salt or Himalayan Pink Salt) and eat salty snacks, like nuts.
  • Drink lots and lots of water, herbal tea, and other non-caffeinated, non-alcoholic drinks.
  • Take buffered salt tablets after meals - we like Thermotabs brand. SaltStick is another popular option. Buffered means they have the right proportion of sodium and potassium for your body. They can make some people nauseous, so taking them on a full stomach helps.
  • Drink 2-4 liters of electrolyte drinks daily. We started with things like Gatorade but then had to reduce sugar in our diets. There are all kinds of drink mixes and tablets in all kinds of flavors to add to your water, so it can take some experimentation to find which ones you prefer. We like GU Brew tablets because they have no sugar and no sorbitol (which can upset the stomach). Nuun tablets are similar and contain a very small amount of sugar - they seem to have removed the sorbitol recently also. There are lots of other options - powders sweetened with various things and unflavored salt water drops or you can even just add some sea salt to water on your own with a squeeze of lemon or lime. Personally, I'm not one for sweet-tasting drinks, so I like V-8 juice when I need an extra salt boost - loads of sodium, plenty of potassium, no sugar, and extra veggies!
Again, that's just the first step - you may see some improvement just from adding salt and water, but much more improvement is possible. Some people try weekly saline IVs (my son did for 2 years), so you are pumping up blood volume directly instead of going through the stomach. Those can work well, but their effects are very temporary - your body quickly comes back to its own "normal" state within a day or two - and it's an invasive procedure.

Know Which Type(s) of OI You Are Treating
Refer back to the diagnosis resources I linked to in the opening paragraphs. It's important to know which of many types of OI you have because that will guide treatment. The most common forms of OI in ME/CFS patients are POTS, where the heart rate (HR) goes up while standing, and NMH, where the BP drops while upright; however, some people have rarer forms of OI, where the HR goes down or the BP goes up or HR and/or BP jump all over the place. OI is just an umbrella term meaning that your body can't hold HR and/or BP steady while upright, so find out which types you have. As I explain in the post on Challenges in Diagnosing Orthostatic Intolerance, some doctors tend to focus solely on POTS (it seems to be the best-known OI condition), so be sure to ask for the raw data and details on exactly what your HR and BP did during the test. Your treatment approach may be different if you have "just" POTS or both POTS and NMH or some other form of OI entirely.

Tips for Using Florinef (fludrocortisone)
One treatment option that can work for all types of OI is Florinef. Its sole effect is to help the body hold onto more salt and fluids, so it can help to increase blood volume, which will help with all types of OI. A few facts about Florinef:
  • It often works for kids and only rarely works for adults. Experts aren't sure why - it may have to do with the larger blood volume in adults. That said, if it works for a kid, it tends to keep working even after he becomes an adult - that's been the case for my son. So, if you are treating a kid, definitely give Florinef a try. It's what got my sons both back to school full-time. And, if you are an adult, it is still worth a try because it does work for some adults; just don't get discouraged if it doesn't work for you after increasing the dose  - move onto the next thing.
  • Florinef Does Not Act As a Steroid. This is a very common misconception among doctors, and even the Physician's Desk Reference (PDR) is misleading on this topic. Here are the facts and an explanation, from the top pediatric expert in the world on ME/CFS and OI, Dr. Peter Rowe of Johns Hopkins:
"Some basic physiology might be helpful to people. Florinef (fludrocortisone) is a mineralocorticoid that helps primarily with salt re-absorption in the kidney, hence the mineralo-corticoid label. It has some gluco-corticoid properties, meaning that it helps in stress responses and glucose metabolism like cortisol does. 

Florinef is quite potent mg for mg in comparison to cortisol. But, the glucocorticoid effect of fludrocortisone at doses commonly used for treating orthostatic intolerance (0.1 mg daily) would be equivalent to just 1.5 mg of cortisol per day. This is a very small glucocorticoid effect, especially when compared to an adolescent's maintenance daily cortisol needs of 12-24 mg per day. 

One confusion is that the Physician's Drug Reference book (PDR) lumps fludrocortisone under the glucocorticoid class, mainly because fludrocortisone does have some glucocorticoid properties. Doing so confuses people, because there is no mention about how little glucocorticoid effect it might have when given in the recommended doses. The PDR then incorrectly suggests that Florinef can suppress the immune system. We know this can happen with cortisol and prednisone, and many people stay away from it because of the other widely known effects of glucocorticoids in high doses (so-called Cushingoid weight gain, acne, mood changes, immune suppression, yeast infections). But in about two decades of using Florinef, I have never seen any evidence of immune suppression attributable to the drug, nor has anyone developed unusual infections while being treated with it. It does not suppress cortisol levels. It can increase BP, which is part of why we use it, but this is a mineralo-corticoid effect, not a gluco-corticoid effect.  

Similarly, Florinef has no anabolic (muscle building) steroid properties as might be seen among those who want to gain an unfair advantage in sports. 

It isn't always the right medication for everyone, but it definitely can treat a subset of those with orthostatic intolerance."
Armed with those facts, here are some tips for trying Florinef:
  • You need lots of salt & fluids. Since Florinef works by helping the body hold onto more salt and fluids, it can only do its job if plenty of them are available in the body. So, first increase salt and fluids, and then start Florinef (and keep up the salt and fluids).
  • Start low and gradually increase dose. Start with just a half tablet (0.05 mg) per day. After a week, if there are no ill effects, increase dose by another half a tablet.
  • You might not see any effects until you get to your effective dose. Everyone is different. 0.15 mg (one and a half tablets) a day was enough for our younger son, and on that dose, he was symptom-free about 90% of the time (his ME/CFS was milder than ours). For our older son, though, we patiently worked the dose up to 0.15 mg a day and saw absolutely no effect. We were ready to give up, but our doctor (the wonderful, now-retired Dr. David Bell) told us to stick with it and go up again, to 0.2 mg a day. Wow! It was like someone had flipped a switch! Our son suddenly felt better, had energy, could think more clearly, and was up off the couch, wanting to go to school and play with his friends. It was like a miracle...and we almost gave up on it. Later, as he grew, that dose no longer seemed effective, and we again increased up to 0.3 mg (3 tablets) a day, which did the trick. I have heard of doses as high as 0.4 mg a day, though most people (particularly kids) do well at 0.2 mg a day.
  • Florinef can deplete potassium. Since Florinef helps the body hold onto more sodium, it can deplete potassium in the body. For this reason, Dr. Rowe recommends that anyone on Florinef also take potassium chloride (KCl) supplements, at a dose of 10 meq KCl for every 0.1 mg of Florinef. So, with 0.3 mg of Florinef daily, my older son takes 30 meq of KCl. Note that this potassium can only be obtained with a prescription; you can not get high enough doses with over-the-counter supplements.
Tips for Trying Beta Blockers
Beta blockers work by blocking certain hormones, like adrenaline (which ones depend on which beta blocker you are taking) that can cause HR and BP to jump around. They will immediately reduce a high HR and are commonly used to treat high blood pressure, but I have found that a low dose beta blocker also helped to stabilize my BP and stop it from dropping when I am upright, so don't discount them if your BP is low or you have NMH. I wrote an entire blog post with information on and tips for finding the right beta blocker, so if you are trying them, please refer to that post for more detailed information. 

Here are some quick highlights:
  • Start with the lowest dose available. This is SO important because doctors often prescribe too high a dose, especially for ME/CFS patients. Too much beta blocker actually causes fatigue, and we certainly don't need that, right? So, start with the smallest dose available of the one you are trying - some patients even cut them in half to start. You can always increase if there is little effect. When I took my first pill of propranolol at the lowest dose available, my HR dropped 30 bpm within an hour! I was stunned...and excited!
  • Avoid short-acting beta blockers. The short-acting ones have to be taken multiple times a day and wear off within 3-6 hours. Each time they wear off, your HR jumps up again. This can actually make your OI worse by introducing these spikes of high HR every time the meds wear off. I started on a short-acting one and found that I felt great while it was working but worse every time it wore off. Plus, I woke up every morning with none in my system and had to lie in bed for an hour waiting for it to kick in before I could get up. Instead, ask your doctor for 24-hour, long-acting type (some, like propranolol, come in both types).
  • Take a long-acting beta blocker at bedtime. This accomplishes two things: it helps to prevent random bouts of tachycardia (high heart rate) during the night that can disrupt your sleep and you wake up in the morning with it already in your system and working effectively. It was a huge improvement for me - I could wake up and jump out of bed and into the shower like a normal person! (yes, treating OI will allow you to shower without crashing, too).
  • You might not immediately "feel better." I noticed this myself. I was thrilled to see my HR drop to almost-normal levels and my BP stabilize, but I didn't immediately notice an improvement in my symptoms. However, if it is working (i.e. lowering your HR and/or stabilizing your BP), stick with it. I found that the symptom improvements came over time. By reducing OI, beta blockers (and other treatments) will automatically reduce exercise intolerance. With my HR at lower levels and my BP not plunging when I stood up, I could begin - very slowly - to do more and be more active. I began to do simple exercises, like leg lifts and core strengthening, while lying on the ground - carefully and while monitoring my heart rate. I began to walk, a bit more each week, slowly building up my strength and stamina. This is not Graded Exercise Therapy (GET) because you have treated the exercise intolerance first before even attempting to exercise. Improved muscle tone further reduces OI, and the improvements build. The positive results increased for me over time, like a domino effect (a positive one, for a change), as I was able to do more and be more active without crashing afterward.
  • If at first you don't succeed, try, try again! There are almost 40 different beta blockers to choose from and some have entirely different mechanisms of action. Just trying one tells you nothing. If you have side effects at the lowest dose or it isn't effective for you even when you increase the dose, then try another one. Those most commonly used for ME/CFS patients include long-acting propranolol, nadolol, and atenolol, but there are over 3 dozen others to choose from! Even for those in the same class, sometimes a patient will do better on one rather than another. There are also newer medications like ivabradine that are not technically beta blockers but can be used in similar ways to treat OI.
Patience and Persistence Pay Off!
This is the final thought I want to leave you with. I have lost count of how many times patients have told me "I tried treating OI, but it didn't help," and it turns out they just tried 1 beta blocker (probably at too high a dose) or only a low dose of Florinef. All treatments for OI can require a lot of trial and error to find just the right combination for each person because we are all different. Also, what I have outlined here are just two of many different treatments available for OI - they are the ones most commonly used but not the only options, by far. For more on treatment options, check out my ProHealth article, Treating Orthostatic Intolerance, and Dr. Rowe's summary brochure on OI. Both of these are also excellent for sharing with doctors because they are footnoted with plenty of scientific research to back them up.

Remember, keep trying! It is well worth the effort for the improvement in all symptoms that results.

Have you tried treating OI yet? Do you have any tips to share?

Tuesday, January 22, 2019

Favorite TV Shows Reviewed in 2018

It was another AMAZING year for TV shows! There is just SO much available now, between streaming services, cable channels, and networks, that it's impossible to keep up with all the amazing shows - but we gave it our best! In fact, our movie viewing has fallen off in recent years because we are watching so much more TV.

The full list of TV reviews I wrote this year (22 in all) is included below, and these have all been added to my TV Reviews tab (along with the ones previously reviewed). They are sorted by genre. Making this list reminded me of some great shows that I had forgotten about!

As usual, we watched a mix of genres and on a wide variety of platforms. We still watch most of our shows On Demand through our cable service (though all are available elsewhere), but many of them are continued from previous seasons (so you can find their reviews in the TV Reviews tab).

Here are a few superlatives from my 2018 reviews to whet your appetite (click the links to see the reviews) - these were painful choices to make in some cases because there were so many excellent shows (so I sometimes cheated a bit and declared a tie). Just to be clear, I only write reviews of shows that I enjoy, so everything on the list at the end is worth trying!

Best Comedy
The Letdown (N) - Netflix
(a hilarious Australian show about being a new parent)


Best Drama
For the People (A, C, I, H?) - ABC
(a new legal drama by Shonda Rhimes)


Best Dramedy
The Marvelous Mrs. Maisel (A) - Amazon Original
(tough call but it has everything & even my husband is watching it now)

Best Crime/Mystery/Thriller  
 American Gothic (A, CBS) - CBS (thriller with dark humor)
Killing Eve (A, C, I) - BBC America (straight-up thriller - outstanding)

 
 Best Sci Fi
 11/22/63 (A, H) - Hulu 
(it's also a Drama & Historical, so also Best Sci Fi for Those Who Don't Watch Sci Fi!)
 
 

All TV Shows Reviewed in 2018
 
In addition to the reviews listed below, also check out my post, When Good Shows Get Cancelled, a round-up of One-Season Wonders still worth watching!

KEY: Available on:
A = Amazon
C = Cable and/or Cable On Demand
CBS = CBS All Access 
H = Hulu
I = On network’s own website
N = Netflix
Note that Amazon Prime original shows are available free only to Amazon Prime members (just like Netflix or Hulu), but some shows are available on Amazon (A) to anyone for a fee.
Most TV shows are also available on DVD (to buy or borrow from your library), which works well if you want to see a show in a streaming service that you don't subscribe to. That's how we watched 11/22/63.

Comedy
The Letdown (N) - Netflix
Splitting Up Together (C, I) - ABC


Drama
Alias Grace (N) - Netflix
Breaking Bad (N) - AMC
For the People (A, C, I, H?) - ABC
The Resident (A, C, I) - FOX
Rise (A, C, I) - NBC



Dramedy (both Comedy & Drama)
Forever (A) - Amazon Original
Glow (N) - Netflix
Good Girls (A, C, I) - NBC
The Marvelous Mrs. Maisel (A) - Amazon Original


Crime/Mystery/Thriller
The Alienist (A, C, I) - TNT
American Gothic (A, CBS) - CBS
Goliath (A) - Amazon Original
Instinct (A, C, I) - CBS (also Dramedy)
Jack Ryan (A) - Amazon Original
Killing Eve (A, C, I) - BBC America
Safe (N) - Netflix
You (A, C, I) - Lifetime



Sci Fi
11/22/63 (A, H) - Hulu (also Drama & Historical)
The Crossing (A, C, I) - ABC
The X-Files (A, C, I) - FOX

Monday, January 21, 2019

Favorite Movies Watched in 2018

And....drumroll! Time for my annual recap of all the movies I watched this year, plus my picks for favorites. Note that not all of these movies were released in 2018; these are just the ones I watched last year.

I reviewed 22 movies last year, compared to 25 movies in 2017 (though I didn't have time to review every movie I saw). You can see the full list and genres below, with my favorites marked with *, but I only review movies that I like, so all of the movies listed below are worth watching. The only genre I didn't cover was documentaries, and I'd like to change that this year. I think 6 of the 22 movies were book adaptations. This was the Year of the Musical, with 3 excellent musicals (all of which I saw on the big screen!). In fact, I saw a lot more movies in theaters this year, so more of these are 2018 releases than usual for me.

You can see my full list of movie reviews, covering several years at the Movie Reviews tab.

And now, for my top picks - do I have to choose? Some of these are touch choices, so I'm going to make up some categories.

Best Suspense\Thriller

We saw several excellent thrillers and suspense movies, but this one takes the prize for originality, acting, and searing tension - never has chewing popcorn sounded so loud!
 

Best Drama

Easy choice, with this original film that was tender, real, and funny with an outstanding cast.


Tough choice in this category, but Sally Fields is outstanding in this quirky, warm comedy about an older woman who gets a crush on a younger man - my friends and I all loved it.

Best Sci Fi/Fantasy
Ready Player One

My son, husband, and I all LOVED the book, and it was wonderful to see this unique, fun story come to life on screen - a visual treat!

Best Musical
Bohemian Rhapsody

 An almost-too-close-to-call tie with A Star Is Born, but I had a grin on my face the entire time I watched this one (except when I was crying and singing) - it helps that I am a huge Queen fan. Both movies are outstanding.


This is the original, not the sequel that came out this year, and my son, husband, and I really enjoyed the colorful, entertaining Harry Potter-related fantasy.

Best Thriller Comedies - a tie!
A Simple Favor


These two genre-bending movies combined plenty of suspense and thrills with lots of humor and were among my favorite movies watched in 2018, so I made up a new category for them!

What were your favorite movies watched in 2018?


All Movies Watched in 2018:
My favorites are marked with *, but I only review movies I enjoy, so all of these are worth a try:

Suspense/Thriller
How It Ends - suspenseful, action-packed, thoughtful apocalypse movie  
Ocean's 8 - all-female crew caper film
* A Quiet Place - captivating family drama plus super suspense and 100% quiet
Red Sparrow - twisty Russian spy thriller starring Jennifer Lawrence
* A Simple Favor - fun, twisty thriller with a great sense of humor
* Taking Lives - dark, twisty thriller about killer who takes on victims' identities


Drama
Every Day - unique teen love story
* Lady Bird - tender, realistic, funny coming-of-age story
Ricki and the Flash - fun, warm, musical, funny family drama


Comedy
* The Big Sick - warm, funny romcom based on a true story
* Game Night - unique thriller comedy with suspense and lots of laughs
* Hello, My Name is Doris - warm, funny movie starring Sally Fields
Trainwreck - light, funny, raunchy romcom
 
Sci Fi/Fantasy
Blade Runner - dark, classic sci fi thriller set in the future world of 2019!
* Extinction - sci fi action-packed thriller with family drama
Jurassic World - Jurassic Park sequel from 2015 - action, suspense, and thrills
* Ready Player One - exciting, fast-paced virtual adventure with loads of 80's pop culture


Musical 
* Bohemian Rhapsody - moving, powerful, joyful story of Queen
The Greatest Showman - entertaining musical about P.T. Barnum
* A Star Is Born - powerful musical with emotional depth and outstanding performances


Family 
* Fantastic Beasts and Where To Find Them (1st movie) -  unique, fun, creative fantasy

The Incredibles 2 - clever, funny, action-packed, and lots of fun


Documentaries
none 

Sunday, January 20, 2019

Weekly Inspiration: You're Right Where You Need To Be

This week's inspiration comes from a wonderful memoir I read in November, Seven: In the Lane of Hope by Michael Marini. Michael happens to be a friend of mine, but I would have enjoyed his
memoir even if I didn't know him - it's a warm, funny, and inspiring story about growing up in a family of 13, and his dad's recovery after a medical problem that almost killed him. You can read my full review of the memoir on my book blog at the link above.

Michael has a great sense of humor that comes out in his book, and there are plenty of laughs in a busy family with 11 kids. But the memoir is also about his dad's recovery, after doctors told the family he was dying. His dad sounds like an amazing character; he has all kinds of sayings that he frequently repeats. He had been a runner and later, a running coach, and each of the kids was on the track and/or cross-country teams in school, so many of his inspiring sayings have their roots in running, but when he was incapacitated and later, recovering, he found that they applied equally well. While reading the memoir, I also found that his sayings often applied to my life with chronic illness.

One of my favorites:

"You're right where you need to be."

He used to say this to encourage his kids while running a race, but later, he reassured himself with this line while in the hospital and recovering. I read this book during my 3-month long crash this fall, when I was feeling horribly discouraged and stuck on the couch. Reading this simple line helped me to relax and recognize that everything else could wait and my "job" right now was to rest and take care of myself. I repeated that line to myself frequently this fall.

Michael also included some great passages about happiness and contentment in the memoir. This one was on a plaque in his mom's kitchen that he'd seen hundreds of times but really struck him one day:

"Allow life's beauty to envelop you. Hold no guilt or worry about what should have been or what might be."

It's again about accepting where you are right now, living in the present, and letting go of past regrets and future concerns. Good advice for us all.

Another thing his dad said, in reference to his time in the hospital:

"Sometimes, it's really hard to slow down and appreciate what you got - even if that's exactly what you need."

This also hit home for me while I was spending my fall on the couch resting. I realized my mind was still in "must be productive and get things done" mode, while I needed quiet recovery time and to live in the present.

Another thing his dad said:

"Live for today, dream for tomorrow, and learn from yesterday."

That seems like excellent advice, whether you are living with chronic illness or not!

Have you read any books lately that inspired you? I'd love to hear about them in the comments below.

You can purchase Seven: In the Lane of Hope on Amazon.

Saturday, January 19, 2019

My Progress in 2018 and My Goals for 2019

I wrote about my goal-setting process in an article for ProHealth: Setting Goals When You Are Chronically Ill (you can read the full article at the link). There, I explained that I don't set New Year's Resolutions that are unrealistic or soon forgotten. Instead, I have lifetime goals that rarely change, and then I set more specific objectives and targets for each of those goals at the start of every year and track my progress. It's a process that anyone can use - not to make unachievable resolutions  but to set reasonable step-by-step (baby steps!) targets to help you actually get what you want out of life...even in a life of limits, like ours.



You can also look back at my 2015 progress and 2016 goals (those related to health & wellness anyway) and also my update on 2016 progress and 2017 goals.

Lifetime Goals
I set these overall goals for my life many years ago - and then updated them a few years back to better reflect my "new normal" with chronic illness. It's funny how I never even mentioned my health in my original goals - we really do take our health for granted until it fails us!


My Lifetime Goals:

  1. To nurture and enjoy strong, fulfilling relationships with my husband, my sons, my family, and my friends.
  2. To be a writer, writing about topics I enjoy and am interested in and getting paid fairly for my work.
  3. To spend time outdoors and to travel, doing activities I enjoy and that rejuvenate me, and sharing those experiences with friends and family.
  4. To create and maintain a comfortable and happy home environment - both physically and financially - that contributes to happiness, comfort, and loving relationships.
  5. To be as healthy as I can be and to take care of myself so that I can do the things I want to do.
  6. To give back, help other people, and be part of a community.
SO THAT, I feel happy and content and can spend my time doing things I love.

2018 Progress
I'm a very data-driven person, so I won't bore you with the details of my progress in 2018, but here is a brief summary of my successes and areas that need further improvement. I'll mainly focus on the things that most of you can relate to, like relationships and health.

How I felt overall remained about the same as 2017 for the first three-quarters of 2018, and my level of exertion was about the same, too - so far, so good. Then, in October, I went into a severe crash that left me mostly couchbound for 3 months, due to a flare-up of my Lyme disease. So, if I include those last 3 months, this year was clearly much worse, but that crash was temporary, and I am now back to my normal baseline. 2016 and 2017 were my best years ever, so I hope to get back to that!

In 2017, I was crashed just 3% of the time (11 days all year!). In 2018, I was doing great up until October and was crashed just 2% of the days! Then, of course, the bottom fell out, so I ended the year with 12% crash days.

How do I know all this? Like I said, I like data! I keep track of how I feel each day on a 1 to 5 scale (1 being great & 5 being badly crashed/bedridden), as well as my exertion levels (also 1 to 5, with 5 being most active). I just jot those numbers on a calendar at the end of each day, along with any unusual symptoms, new treatments, etc. So, I've been tracking these numbers, with monthly and yearly averages, since I first got sick in 2002. I also look at % of time spent crashed (a 4 or 5 on my scale). This data also helps me to tell whether a new treatment is helping. My annual average for 2016 and 2017 was 2.2, a huge improvement over my early years of illness. In 2018, I was at about 2.3 up until that big crash at the end of the year, so I ended 2018 with an average of 2.5. If you're not as analytical as I am (I suspect few people are!), you can just jot down the numbers and notes at the end of each day and use it to see patterns in push-crash, whether a new treatment is helping or not, and other information to help manage your illness day-to-day.



2018 Successes:
These are the objectives where I came close to or exceeded my targets for this year.

My relationship with my husband & sons (note: our sons are grown and mostly out of the house now):
  • Had date nights 2-3 times a month
  • Took walks or other time spent outdoors with my husband 2-3 times a month
  • 6 overnight trips together
  • Spent time each week with our sons
  • 2 "trips" with our sons (our vacations didn't work out but we did have "staycations" and visit family together
My health:
  • Tried 5 new treatments for my son and I (related to MCAS and Lyme & other tick infections)
  • Walked 4 times a week about 80% of the time *
  • My longest walk was 1 hour and 50 min! *
  • 10-15 minutes of gentle yoga stretches on the floor every morning
  • Meditate 10 min every day
  • Muscle building 4 times a week about 80% of the time, with substantial increases in weights and reps *

* NOTE:  My exercise is NOT Graded Exercise Therapy (GET), and I am ONLY able to exercise because of several treatments for my ME/CFS that have eased the exercise intolerance somewhat, including treating Orthostatic Intolerance and treating immune dysfunction. I still definitely have limits and use a heart rate monitor to help stay within my limits and prevent post-exertional crashes. Other treatments have helped as well - you can read my full summary of treatments that have been most effective for my son and I, allowing us to live active lives again.

Areas That Need Improvement:



Other relationships:
  • I only got together with friends (my goal is once a week) about 80% of the time in 2018, way down from 2017.
  • I didn't stay in touch with my mom, my stepmom, and my father-in-law as much as I'd like to.
  • I didn't stay in touch with distant friends much in 2018 (other than Facebook - thank goodness for that!)
Health:
  • I had a target of doing a longer yoga session (I have a 30-min tape that works for me) once per month - I didn't do that even once all year! 
  • I need to do better about putting away my laptop by 7pm because I know it wears me out in the evening (I'm doing OK with that but there's room for improvement).
  • I still need a LOT of improvement on putting away my work and resting when I crash - I only listened to my body about two-thirds of the time.
  • I need more fun! I get caught up in writing, helping in support groups, my blogs, and other work and have trouble just relaxing.

2019 Objectives and Targets
I won't bore you with all my detailed targets for writing, family, home & finances, etc., but here are my health-related Objectives and Targets for 2019. Note that many of my targets from 2018 are just carried over to 2019. In many cases, I am making progress but need to keep working at it - remember, baby steps! I did change a few significant things in my Writing targets for 2019, related to my blogs, my freelance work, and the ME/CFS Effective Treatments book I am working on, to try to ease some of that pressure I feel. My biggest problem is trying to do everything at once!




Health-related objectives & targets: 

1. Try New Treatments (this is an objective every year - I never stop searching for things that will help my son and I to improve our health & our ability to function). We'll continue to work on tick infections in 2019, though our new protocol is working well so far, and I'd like to talk to my doctor about mestinon.

2. Take Care of Myself:

  • Rest when symptoms flare (3 or higher on my scale)
  • Do 2 quiet things just for myself each week (no multi-tasking!)
  • No computer after 7 pm
  • Do 2 fun things each week that are not TV
  • Take one "day off" each month
3. Improve Stamina (again, only possible because I first treated exercise intolerance)
  • I am continuing my goals of 10 min of yoga each morning, walk 4 times a week, and do some muscle work (usually lying on the ground to keep my HR down) 4 times a week - I lost some ground this fall, so I am working my way back to where I was.
  • And yes, I am going to try again at doing a longer yoga session (30 min) once a month.
  • Walk a 5k - yes, really! A friend with ME/CFS inspired me, and I was ready by October - and then that bad crash hit. So, I am going to try again this year.
The targets under Take Care of Myself may seem pretty basic, but I still struggle with taking care of myself, taking time out for fun, resting when I should, and relaxing. In fact, as I've improved, I've naturally wanted to do even more, so these kinds of simple self-care actions are even tougher now. My time and energy are still so limited that I want to be as productive as I can when I am up and feeling OK...so I need these reminders to take some time out for myself.

We are each at a very different place in our illness journeys, even when we have the same illness, so your goals, objectives, and targets will necessarily be different than mine, but I hope that sharing my goals and progress with you will inspire you to embark on a similar process for yourself. This helps me to actually achieve my goals, instead of looking back at the end of each year and realizing that nothing changed (which is what I used to do!)

Have you set any goals or objectives for yourself for 2019? How was 2018 for you? Please share in the comments below!

Sunday, January 13, 2019

Weekly Inspiration: Forge Meaning and Build Identity

I was looking for an inspiring TED Talk today and came across an old favorite of mine, How the Worst Moments in Our Lives Make Us Who We Are by Andrew Solomon. He is an amazing speaker, and every time I hear him, in a TED Talk or on a podcast, I am moved and find myself trying to write down some of the bits of truth he says. In fact, I think I posted this same TED Talk on the blog before, but it was five years ago, and the link no longer works, so I thought it was worth revisiting.

In this moving, funny, inspirational talk, Solomon explains how we can find meaning in our lives through adversity. In the second half, he talks mainly about his own struggles as a gay man (and earlier, as a bullied child), but he also talks about people who've been imprisoned, parents with disabled children, and other types of adversity as well. His main message, which certainly applies to life with chronic illness, is that through the worst things we endure in life, we can forge meaning and build identity. I love that phrase and end up jotting it down every time I hear him speak! He also says, "You can forge meaning and build identity and still be mad as hell," and talks about how oppression builds the power to oppose it.

Listen for yourself - even though I have heard this exact talk at least twice before, the ending still brings (happy) tears to my eyes:



I hope you find Solomon as inspiring as I always do.

He has also written several books (which I want to read!), including The Noonday Demon, on depression (which won the National Book Award); Far From the Tree, on parenting; and Far and Away, about how travel can change the world.

Have a wonderful week!

        

Sunday, January 06, 2019

Weekly Inspiration: Plan for a Wonderful New Year!

Happy New Year!! I had good intentions of posting more often this week (and intend to get back to a regular routine in January), but one of my sons was very, very sick and at home with a high fever and terrible sore throat - turned out to be strep throat that wasn't responding well to antibiotics, tonsillitis, an abscess on one tonsil, and maybe mono (though we're not sure of that last one). So, I spent much of my week making him soothing foods that he could swallow (lots of soups, smoothies, and shakes!) and taking care of him. He is now on antibiotic #3 and a short burst of steroids for the tonsils and feeling much, much better - now I'm having trouble keeping him home! lol This coming week, we'll have both sons home part-time plus a birthday plus two family members heading off on trips...so I will probably (realistically) be posting more starting next week!

When I did have time to work this week, I was immersed in my annual process of reviewing the past year and setting goals for the new year. I'm not quite finished reviewing 2018 - the last part left is illness-related - so I will share that with you when I finish and have a chance to set goals for the new year.

You may be thinking that it's impossible for someone with ME/CFS to set goals (or resolutions, though I prefer goals), especially when this past week, all we've heard online and in the media has been about exercising more and resolving to get fit in 2019! But, we can set our own goals, based on our own limitations. For instance, one of my on-going targets is to rest when I don't feel well - listening to my body has always been a challenge for me! Another target I set every year is to try new treatments. Even though my son and I function well most of the time and are in much better shape than we were 5 years ago, these illnesses still rule our lives, so I am always on the lookout for new treatment approaches that might bring another small step of improvement. For some ideas of treatments that you can try, check out my page on Effective Treatments for ME/CFS.

Maybe you want to improve your diet or learn to knit or draw more or try audio books. Your goals will be based on what's important to you and what you want to accomplish.

But how do you actually set and meet your goals? I created my own system that includes measurable targets years ago before I got sick and adjusted that process for my life with chronic illness. This article I wrote for ProHealth, Setting Goals When You Are Chronically Ill, explains all the details with examples to get you started. This is something that anyone can do. You can also look at my post from 2017, My Progress in 2016 and Goals for 2017. I hope to post this year's goals in the next week or so.

Oh, and I forgot to share some VERY good news. My severe crash of the past three months is finally over! Christmas Day was the first day I truly felt good, with no aches or other crash symptoms, and that has continued. It was a matter of treating my Lyme recurrence (details here) and finding the right balance with a new Lyme treatment protocol, plus getting my immune system to settle down. So, I am starting the new year off right, back to my "normal" baseline and able to be a bit active again.

Have you set any goals for the new year? What would you like to accomplish in your own life?