Showing posts with label allergies. Show all posts
Showing posts with label allergies. Show all posts

Friday, December 06, 2024

Diets Recommended for Chronic Illness: Paleo, Keto, Carnivore


I finally edited and uploaded my video on the three diets most often recommended for ME/CFS, long-COVID, and other immune disorders: paleo, keto, and carnivore diets.

The video describes each of these three different diet options in detail, including what each entails, how they can benefit someone with chronic illness, and lots of ideas on what kinds of foods to eat, with plenty of suggestions for meals, snacks, and recipes. All three of these diets are often recommended for a wide variety of medical conditions, including immune disorders like ME/CFS and long-COVID, autoimmune disease, and any health problem that involves inflammation. They are all low in inflammatory foods, low in foods likely to exacerbate food allergies or intolerances (which are very common in ME/CFS and long-COVID), and good for those with yeast overgrowth (also very common in ME/CFS due to our specific kind of immune dysfunction). Surprisingly, these diets are also very tasty, with a wide variety of flavors, and are easier and less work than a traditional diet.

We have tried all three and have seen benefits in reduced symptoms, increased energy, and better control of yeast overgrowth. We ate paleo for about a decade or so, and I wrote a detailed blog post about the paleo diet, if you prefer to read about it. However, as I explained in the video, I now know it was a mistake to make exceptions to it, so ignore the modifications I talk about in the post! When I have more energy, I'll update that. It worked well for us for a long time and might have continued to work for me, if I'd been stricter with it. At the start of 2024, I ate mostly carnivore for three months, which helped to get my yeast overgrowth under control. And since April, I have been eating more of a keto diet. My husband has also been eating keto, all year. We both lost weight (though that was not my intention), and my cholesterol and triglycerides are the lowest they have ever been, by a lot!

You can watch the video on YouTube or here:


These diets have definitely helped my son and I over the years. In fact, discovering my son was severely gluten-intolerant in 2020 and getting him on a gluten-free diet (which all of these are) was a key to his current excellent condition. Eliminating gluten and following a paleo/keto/carnivore-ish diet (he eats sort of a mash-up of the three these days) helped to not only improve his gastrointestinal symptoms but also significantly improved all of his symptoms. Since June, he has been working a fairly rigorous, physical job in the field he studied full-time! It still feels like a miracle to us, but he says it's the best he's felt in as long as he can remember (he's 30 now and has been sick since age 10).

We are still learning, so I would love to hear about your experiences (or your questions).

Have dietary changes helped you?
 
Have you tried any of these diets?
 
Please share your experiences with diet or your comments and questions.

You can leave a comment below.

You can also connect with me on Facebook and Twitter and Instagram.

Wednesday, January 31, 2024

Video: My First Month on the Carnivore Diet


Lots of people have been asking me about the new carnivore diet I began on January 2 (with a gradual move toward it in the two weeks before that). This has helped me to finally get chronic yeast/candida overgrowth (often a part of ME/CFS) under control, which has resulted in huge improvements for me. My immune symptoms (flu-like aches and exhaustion) cleared up and my energy has been really good for most of the past month (with a few rundown days this past week but today was better).

As I explain in the video, I am not a medical professional and am not recommending other people do this. I'm just trying to share my experiences and what I've learned so far, so you and your doctor can make informed decisions, based on your own medical needs.

In this video, I explain what a carnivore diet is & why I'm trying it, why it's supposed to be helpful for those with immune disorders, what we eat, and my results so far (spoiler: great!), with explanation of alternatives like Paleo & Keto. You can watch the video on YouTube or here:



If you watch it here, I will include the list of notes & links (that I mention in the video) that are below the video on YouTube:

Chronic Illness Vlog 1-8-24: Much Better! The Diet That's Helping

A good place to start on improving diet and helping yeast overgrowth is a Paleo diet. This post explains what it is, the modified Paleo diet we were eating, and how it helped us (note that if I'd stuck to strict Paleo, without the modifications, I might not have gotten as bad as I did!).

 Beginner's Guide to Keto Diet

Effective Treatments for Yeast Overgrowth/Candida

Orthostatic Intolerance (OI) in ME/CFS, Long-COVID, Lyme, and other illnesses

OI video

Harvard Carnivore Diet Study

Article I mentioned on Anti-Candida Diet

Diagnosing and Treating Thyroid Dysfunction


Let me know if you have any questions.

Have you found any special diet that helps with your chronic illness?

Please leave a comment below.

You can also connect with me on Facebook and Twitter.

Friday, July 22, 2022

News from Our House: ME/CFS, GI Problems, and Diet


Did you miss me? For once, it wasn't my ME/CFS or Lyme that kept me from posting on my blog or making new videos!

We had to take an unexpected cross-country trip. My father-in-law passed away at 97 years old the first week of July. He had severe dementia and had lived a long life, so it was time. He wanted to be buried next to his wife, where he'd lived most of his life, in Oklahoma. So, my husband and I headed out on a long road trip. There was no way I was going to fly on a packed airplane with no one wearing masks and delays and cancellations rampant!

We drove four days to get there, staying in hotels along the way because it was much too hot to bring our camper (105 in Oklahoma!). The funeral service was lovely, with friends and family coming from near and far and lots of personal stories and memories. And then, we drove (well, my husband drove) another four days back. Other than some back pain from sitting in one position for too long, I do well on long car rides--it keeps me off my feet and forces me to do nothing! But we were both very glad to get back to our own bed and the couch and recliners!

No time for sightseeing but we passed by the Gateway Arch!

 

ME/CFS, GI Problems, and Dietary Changes 

Since my ME/CFS first started in 2002, GI problems had not been a big issue for me. The mild digestive symptoms I did have were completely eradicated when I discovered I'd become intolerant to dairy and began avoiding it. A full 30% of those with ME/CFS are dairy intolerant, according to one study, so definitely test that out if you have any GI symptoms.

But in September 2021, for no discernible reason, I suddenly developed chronic diarrhea. With the help of both my Lyme specialist and a functional medicine specialist, things have improved in recent months, mostly thanks to loads of probiotics--very specific ones, based on stool testing to show what I had too much of and not enough of (note that the testing did not show any pathogens). But I am still reliant on very high dose probiotics and still don't have an answer as to why these problems suddenly began last fall.

Food Sensitivity Testing

Before we left, at the end of June, I received the results of Food Sensitivity Testing (from Alletess). This is IgG testing, measuring the immune response to various foods. My Lyme specialist recommended it, and I didn't expect to learn anything surprising. After all, I already knew I was intolerant to dairy, and nothing else seemed to upset my stomach.

So, what a surprise it was to look at my results and see more than a dozen food ingredients show up as mild to moderate sensitivity, including:

Moderate

  • Cashews
  • Pistachios
  • Sesame

Mild

  • Macadamia nuts
  • Poppy seeds
  • Grapes
  • Pineapple
  • Watermelon
  • Black-eyed peas
  • Chickpeas
  • Green peas
  • Peanut
  • Soybean
  • Casein
  • Whey
  • Cow's Milk (no surprise)
  • Egg white
  • Oregano 
  • Peppermint
  • Rosemary

There are a few others, but these are the main ones that I eat most often. I was eating eggs every day, drinking peppermint tea every evening, and even taking capsules of oregano and rosemary every single day ... for years! We often cook Asian-style meals with plenty of soy sauce and sesame oil. I used whey powder in my daily smoothies for lunch. And guess which nuts I most often eat, as part of my mostly-Paleo diet? Yup, cashews, pistachios, macadamias, and peanuts (not a nut, I know). In fact, since I knew I couldn't have dairy, I was eating dairy substitutes like cashew milk, cashew sour cream, and cashew feta cheese (all excellent, by the way), plus eating plain cashews and cashew butter daily!

I discussed the results with my Lyme specialist while in the car on the way to Oklahoma, and she explained some things. She said eating a food constantly (like eggs, peppermint, or cashews) could make me more sensitive to it. Also, since most of my test results showed only mild sensitivity, I could probably tolerate them once in a while, if I avoided them most of the time. She said the key was lots of variety and not eating the same thing every day ... which I had been doing!

Dietary Changes

So, I took her advice and eliminated everything on my sensitivity list from my regular diet, though I do splurge once in a while. I really love my smoothies and know the whey powder is a glutathione precurser, so I have a smoothie once a week (and am searching for a protein powder with no whey, peas, chickpeas, or soy - probably won't find one!). 

sigh ... no more daily Paleo smoothies!

I avoid eggs all week and use only the yolks if we have hard-boiled eggs in a salad, but I have eggs on the weekends when my husband and I have breakfast together. I struggled with how to have a high-protein breakfast with no eggs, but I am finding some combinations that work, like oatmeal made with chia seeds and walnuts or high-protein, high-fiber cereal with pecans and chia seeds (both with plenty of fresh fruit on top and almond or oat milk). I even tried a vegan egg substitute, Just Egg, that was OK. I may have that once a week as a scramble with veggies. 

Much as I hate restricting my diet so much, I did have a pretty good week GI-wise, with few problems (except for today when I ate the whey powder!). And, on the plus side, most of my sensitivities are mild, and nothing at all showed up under meats & poultry, grains & starches, beverages, or vegetables (and very little under fruits and herbs/spices).

Luckily, I can still eat all veggies!

I definitely recommend this kind of food sensitivity testing because I was completely unaware of most of these (and it was inexpensive, about $150).

For my son, discovering--through testing--that he was severely gluten-intolerant was a huge factor in his recent improvements, allowing him to work full-time now! It's really been amazing what a difference eliminating gluten made for him, in all aspects of his illnesses. He was quite resistant to the idea before, since many of his favorite foods have gluten, but now that he's seen the results, he's strictly gluten-free by choice.

 

Relapses and Recoveries

Just a reminder that my last update covered a list of treatments that helped me recover from multiple relapses, including a post-COVID relapse, and a list of lessons learned that are applicable to anyone with ME/CFS or long-COVID.

I also did a video update before my trip, an update on my relapse recovery, long-COVID recovery, and how I track my illness.


What We're Watching and Reading

Summer for me means Big Book Summer! This is a fun, low-key reading challenge I host every year, and this is its 10th anniversary! A Big Book is just any book with 400 or more pages, and any kind of book counts: middle-grade, audio, graphic novel, etc. And it's low-key because you set your own goals, whether that's reading one Big Book between May and September or two or setting aside a stack like I do, to choose from all summer long. It's still only July, so there's plenty of time left to sign up--all the details are at the link above.


Here's my June reading wrap-up, of the four Big Books (two in print and two on audio) I finished last month - all were very good!


My husband and I haven't been watching many movies lately, but as usual, we are enjoying a bunch of TV shows, even while on the road (the advantage of hotels over camping--WiFi!).

The Flight Attendant, based on the novel by Chris Bohjalian, on HBO is a fun, darkly humorous thriller starring Kaley Cuoco as a flight attendant whose life is a total mess. She's a party girl who drinks too much, and one night in Bangkok, she sleeps with a guy she really likes, who is dead in a bed filled with blood when she wakes up beside him the next morning! What follows is a fast-paced, deadly race to find the killer and save herself. Read my full review and watch the wonderful trailer at the link.


The other thriller (slightly less frantic) that we are enjoying is The Old Man, starring Jeff Bridges and John Lithgow. Bridges plays a former CIA agent who has been hiding out, living a quiet life for decades, when suddenly someone finds him and tries to kill him. He's prepared for this, but wasn't expecting it right now, so he goes on the run, reluctant to break ties with his adult daughter, though he knows that's how to keep her safe. This is a very twisty story, filled with old secrets, past histories, and plenty of action and suspense.

How about you? How are you doing this summer? 
And what have you been reading and watching? I'm always looking for recommendations!

Wednesday, May 19, 2021

Prep for ME/CFS Patients Getting a COVID Vaccine


This is my third post about the COVID vaccines and ME/CFS. The first, ME/CFS and the COVID-19 Vaccines, explained about the specific kind of immune dysfunction in ME/CFS, how these vaccines work, and sources for patient experience. My latest post last week, COVID Vaccine Experience of ME/CFS Patients goes back to some of those resources for patient experience, three months later, to discuss what has been reported by thousands of patients. This third post will cover preparations that the ME/CFS experts recommend you take before getting your vaccine. Note that this third post, about vaccine preparation, will probably be helpful for people with a wider range of chronic illnesses than just ME/CFS.

There are three main concerns about getting the vaccine in ME/CFS and other chronic illnesses, with different things you can do for each to improve your chances of a good outcome. First, I will cover the basics: things you can do to help improve your ME/CFS in ways that will help you to better tolerate the vaccine (and feel a whole lot better, too!). Then, I will sum up with a list from the experts that pulls all of this together.

 

Improve Detox

It's well-known that many patients with ME/CFS over-react to even tiny doses of medications or supplements, so the concern with the vaccines is that we'll react to something in them and have trouble clearing it out of our systems. This ability to detox effectively and process toxins in our bodies is directly related to the methylation process. Methylation happens within each of our cells, and is a complex series of processes. Methylation not only controls detox processes but also the manufacture of adrenal hormones (which control all bodily functions), neurological processes, and even the manufacture of DNA and RNA. If you have poor methylation (as most with ME/CFS do), you are likely to have more trouble with the vaccines.

Fortunately, there are lots of simple steps we can take to help improve methylation, which will in turn help to improve many aspects of our disease. This post, The Methylation Cycle: Central to ME/CFS, explains more about what methylation is, what it does and how it works, and toward the bottom, steps you can take to improve methylation.


Reduce the Possibility of an Allergic Reaction

Since ME/CFS is, at its heart, an immune disorder that makes most of us over-react to allergens, allergic reactions are a bigger concern for us than for the general public. Many of us react to all kinds of things, from medications to foods to things in our environment. This tendency of our immune system to over-react to allergens puts us at greater risk of a serious allergic reaction to the vaccines.

Many of us with ME/CFS also have Mast Cell Activation Syndrome (MCAS), where our mast cells (part of the allergic system) are in an almost-constant state of activation. This can result in typical sort of allergy symptoms, like runny nose, sinus problems, watery or itchy eyes, hives, and even anaphylaxis (swelling/closing up of the throat and mouth). But, for us, MCAS can sometimes just add to our "normal" ME/CFS symptoms, like fatigue, lack of energy, pain, immune symptoms, and brain fog.

My son and I began treating MCAS a couple of years ago; his food allergies were ramping up and he'd had an unexplained anaphylactic episode and my "usual" allergies (mostly dust and mold) were just bothering me all year-round. Treatments for MCAS are mostly simple and easy to find, available over-the-counter without a prescription. We've both seen improvements with this approach, and I know other patients who've seen even more significant improvements from treating MCAS. You can read all about MCAS, how to treat it, and what is working for us at my post about Mast Cell Activation Syndrome (MCAS) and ME/CFS. It's more than just antihistamines, so take a look.

Again, as with improving methylation, treating MCAS or using MCAS-type treatments will not only reduce your chances of a bad reaction to a COVID vaccine but may also improve your overall condition.


Improve Your Immune Function

Since immune dysfunction is at the heart of ME/CFS, improving or normalizing your immune function will help to improve ALL of your symptoms ... and will also help to ensure you respond to your vaccine as "normally" as possible. Improving immune function ahead of time can help to improve the odds that you will not relapse badly after the vaccine and that your body will do what it's supposed to and make the COVID antibodies. And, again, it will improve your overall ME/CFS condition.

Much of what I have written about here on the blog and in articles for the past 14 years has been about the immune dysfunction of ME/CFS and how to treat it. My son and I have had great success with this, and much of our improvement over the years (we now both function fairly well and live pretty active lives) is due to improving immune function. Immune System Abnormalities in ME/CFS provides an overview of how the immune system in ME/CFS is dysfunctional. And Immune Dysfunction in ME/CFS summarizes the three simple, inexpensive treatments that have helped us the most over the years, as well as a discussion of the importance of treating underlying infections. That post links to more information on inosine, low-dose naltrexone, glutathione, and more.

Finally, back in February, I wrote about my bad relapse that began in March 2020 (and lasted until two weeks ago!) and the immune issues my doctor found and some treatments recommended. I ended up getting the most benefit from a product called Transfer Factor Multi-Immune from Researched Nutritionals (we buy it directly from our practitioner, but I see a few places where you can find it online). It--like the three treatments I mentioned above--is also supposed to help normalize immune function, increasing Natural Killer Cell function and balancing Th1-Th2 (explained in the immune anbormalities post above), both very much needed in ME/CFS. It has worked well for me, and I think has been a factor in my long relapse finally ending. I started at 1 pill a day and gradually increased to 3 pills twice a day.


Experts' Recommendations

You can read advice from several top ME/CFS experts down toward the bottom of this Health Rising article. Many of them advise taking antihistamines like Benadryl or Zyrtec--that's to prevent an allergic reaction, as discussed up above and in the MCAS article I linked to.

Dr. Nancy Klimas, one of the top ME/CFS experts in the world, has recommended the following supplements, added every day, at least two weeks before your first shot:

N-Acetyl Cysteine (NAC) 600mg
Alpha Lipoic Acid (ALA) 300mg
Carnitine 1000mg (we take 1 L-Carnitine and 1 Acetyl-L-Carnitine - more info here)
Zyrtec (we get generic liquid gels (no lactose) or Benadryl start day before and continue for 3 days after

Everything listed here is aimed at one of the three areas I outlined above (detox, allergic reactions, and immune function), and as I said, any of these should help your ME/CFS!

There are lots of ways to increase glutathione (glutathione in pill form is not very effective). It's all explained in my post on Increasing Glutathione in ME/CFS. This will help with detox, improve immune function, and give you more energy.

My son and I were already taking all of these daily (for many years), except for vitamin C, so I added 1 g of liposomal Vitamin C daily for both of us (liposomal is better absorbed and less likely to cause stomach upset or diarrhea). I also normally only take Zyrtec at night, so I took it twice a day for a few days before my vaccine (see MCAS post).

And, my Lyme specialist also recommended increasing selenium for two weeks before my vaccine, so I doubled my normal dose. Again, I've been feeling really good, so I will probably continue the vitamin C and higher dose of selenium (after talking it over with my doctors).


And, after all that ... I got my first dose of the Moderna vaccine today! It was about 7 hours ago, and so far, I have no reaction or side effects. I am willing to put up with even 2-3 weeks of a bad crash; I just don't want to go into another long-term relapse, so I am hoping I have improved my chances of a good outcome. I feel like I have done all that I could that is within my control.

Remember, there are polls and groups where you can document and discuss your own vaccine experiences, so check those out.

Have you had your vaccine yet? If not--or if you still need your second dose--then I hope this information will help you.


Note: This post contains affiliate links. Purchases from these links provide a small commission to me (pennies per purchase), to help offset the time I spend writing for this blog, at no extra cost to you.

 





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--some dramatically--with some simple MCAS treatments.


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 year-round 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, vegetables, and nuts,  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 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, which is 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 generic names here, with U.S. brand names in ( )--you can find these products simply by clicking the links to the generic names--generics are identical to the brand names but cheaper):
  • H1 blockers are typically sold as antihistamines, including all of the over-the-counter products, like the non-drowsy choices: loratadine (Claritin), fexofenadine hydrochloride (Allegra), cetirizine hydrochloride (Zyrtec), and levocetirizine dihydrochloride (Zyzal), a newer one. Diphenhydramine (Benadryl) is an older antihistamine that is an effective H1 blocker but can cause drowsiness (and contrary to popular belief and a lot of advertising, it is not a good choice as a regular sleep aid; see article on Correcting Sleep Dysfunction in ME/CFS). You can easily buy these online (see links) or in any drugstore without a prescription, and most are available as generics (so much less expensive). Note that most of them that are solid pills contain lactose as a filler (read the label for inactive ingredients to check); you can get lactose-free versions by buying gel caps, where available (click any of the links above and search for the name plus gel caps). That's what we do: we buy generic cetirizine (Zyrtec) gel caps on Amazon. Dr. Afrin sometimes uses twice-daily dosing, which is double the normal the dose. If one doesn't work for you, try another - everyone responds differently.
  • H2 blockers are usually sold over-the-counter as acid blockers, with brand names like famotidine (Pepcid AC), cimetadine (Tagamet) and others (note that ranitidine (Zantac) was recalled last year). 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. My son tried the oral liquid but couldn;t tolerate it, but I know it works well for some people.
  • Quecertin is an herbal supplement with antihistamine effects, which is naturally occurring in some fruits and vegetables and tea. We often use this brand, and our functional medicine specialist recommends Histaquel from Researched Nutritionals, which we buy directly from them. We've found Histaquel to be very effective.

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 generic Zyrtec liquid gel caps (double dose for him) and Quecertin (2 pills twice a day) daily, as well as an acid blocker/H2 blocker. We started with Zantac and switched to  Pepcid-AC when Zantac was recalled. Note that there is no way to predict which particular medication in a category will work best 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 tried ketotifen, 1mg daily, compounded, though he didn't see any change from that. He tried the liquid Cromolyn, but it gave him diarrhea, though I have heard that it works well for other patients.

As for results, my son reports that his food allergy symptoms (itchy mouth and throat with certain foods) have improved, and he hasn't had another anaphylactic reaction. My allergy symptoms are definitely better controlled now; I already took Zyrtec daily but adding Quecertin and famotidine has helped.

The bottom line with treating MCAS is that 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?

Note: This post contains affiliate links. Purchases from these links provide a small commission to me (pennies per purchase), to help offset the time I spend writing for this blog, at no extra cost to you.


. . . . . . . . . . . . . . . . .

Thursday, December 07, 2017

Throwback Thursday: Diet and ME/CFS & Lyme

For this week's Throwback Thursday, I am pulling together some of my past posts about diet, food, and food intolerances & allergies. This topic is important for anyone with a chronic illness but especially important for anyone with ME/CFS and tick infections, as we have in our house. We learned just how important only gradually, but in recent years, diet has played a big role in helping my son and I to feel better and be able to do more.

Food Intolerances
ME/CFS is an immune disorder, and the particular type of immune dysfunction in ME/CFS causes our immune systems to over-react to the presence of allergens. This means that it is very, very common for ME/CFS patients to suddenly develop food intolerances and allergies to foods they have never had trouble with before. In fact, food intolerances are often behind the gastointestinal symptoms that are an integral part of ME/CFS, and eliminating the problem foods can dramatically improve GI symptoms.

That's what happened with me. Before ME/CFS, I drank about a quart of milk a day and loved cheese, ice cream, and other dairy products. I was skeptical when Dr. Bell, one of the first ME/CFS experts who is now retired, suggested I give up dairy, I didn't think it would help, but I tried it for 2 weeks. I didn't see much difference, so I added dairy back into my diet - Wow! Instant cramping, gas, and other GI problems. I gave up dairy...and my GI symptoms went away completely.

A recent study done by Dr. Peter Rowe (another top ME/CFS expert) showed that a full 30% of the young people with ME/CFS in the study were dairy intolerant - and the number is likely the same in adults, thanks to our immune dysfunction. The study also showed a dramatic improvement in quality of life when those kids who were dairy intolerant gave up dairy.

Note that if you are lactose-intolerant (for me, it is both lactose and casein, the protein in milk), lactose is a common ingredient in many medications. The blog post at that link explains how to manage lactose intolerance generally and lists medications that contain lactose.

There have not been studies done on other common allergens, like gluten, soy, eggs, etc. in ME/CFS, but again, our immune dysfunction makes us prone to food intolerance and allergies, so it's a good idea to check with elimination diets.

Eating Paleo
In the last few years, my son and I have switched to a Paleo diet (with our own modifications), and it has definitely helped with ME/CFS, Lyme and other tick infections, and yeast overgrowth. Paleo basically means no grains, no dairy, no sugar. This blog post describes our approach to eating Paleo for immune disorders, with an explanation of why it's a good diet for patients with these diseases/conditions, how we manage it, and lots and lots of recipes and resources to help make it easier (and delicious!).

In addition to diet being essential in managing yeast overgrowth, diet is also very important in improving methylation, a critical step in improving both ME/CFS and tick infections. Several dietary components, including dairy, gluten, and gliadin, block one of the methylation pathways.

Finally, for details on how diet has helped my son and I improve over the years, see My ME/CFS Improvements in 2014 and How My Son Went From Couchbound to College.

How about you? Have you discovered any food intolerances or allergies? What kind of diet has helped your illness?

Thursday, April 27, 2017

Preventing and Treating Allergies

Flowering trees are one of the biggest allergy culprits in the Mid-Atlantic
Here in the Mid-Atlantic region of the U.S., everything seemed to start blooming at the same time this year, creating an allergy season even worse than usual. We were on vacation in Virginia the week that everything blossomed down there and returned home just in time for our own blooming season, so I had two really bad weeks of allergies in a row. My son, here in college, texted me on our vacation to say his allergies were horrible, so bad that his skin itched all over and he occasionally broke out in hives (spring trees are one of his biggest culprits).

Although allergies are a problem for much of the population, they are even more prevalent in those of us with ME/CFS. The particular type of immune dysfunction that characterizes our disease - a Th2 dominance - makes our immune systems over-react to allergens, making us even more prone to allergies or perhaps even developing them for the first time in our lives after getting ME/CFS. For me, sudden-onset allergies were a precursor to ME/CFS, one of many signs that my immune system was going haywire. I never had any kind of allergies until I was 30 years old, and now I struggle with them year-round.

One way this tendency toward allergy shows itself in ME/CFS is our likelihood of developing food intolerances and allergies. My older son and I used to drink LOTS of milk every day and never had a problem, but we both became dairy intolerant after developing ME/CFS. In fact, a recent study showed that 30% of ME/CFS patients are dairy intolerant, so if you have undiagnosed gastro-intestinal problems, definitely try giving up dairy (and remember to check your medications for lactose).

The other primary way this immune dysfunction shows up in allergies is a response to environmental elements. This can be seasonal - as in the case of my son's spring allergies when the trees blossom - or year-round, as are my own allergies to dust mites and molds. Lucky me - I also have occasional allergy flare-ups when things bloom, like I did this spring.

Allergies aren't just a minor annoyance. Even in healthy people, like my younger son, a bad allergy flare-up can make him feel sick and exhausted. And when you add allergies in on top of ME/CFS (or fibromyalgia or Lyme), allergies can be the straw that breaks the camel's back, worsening all of your "normal" symptoms. It's an additional load on our already-overloaded immune systems. So, what can you do about it?

Prevent Allergies By Normalizing the Immune System
This post explains all about the immune dysfunction in ME/CFS, which is at the heart of our disease. Treating immune system dysfunction can therefore get at the root of ME/CFS and help to improve all of its symptoms. My son and I have found this to be very true, and much of our improvement over the past 10 years has been from treatments aimed at normalizing the immune system. One of those treatments is low-dose naltrexone, which helped us in many ways and is aimed at correcting (to some extent) those immune system abnormalities.

The other main treatment we use to normalize our immune systems is inosine, sold as a supplement in the U.S. (and quite cheap). That blog post linked in the previous sentence has all the details of our use of inosine, what it does, and dosing (which is a bit complicated). As I explained in a post last week on Virally-Induced Crashes, inosine has greatly reduced those kinds of crashes for both my son and I. We used to spend most of the winter relapsed from being exposed to one virus or another, and now that is a rare occurrence.

Much to my delight, though, I noticed another benefit of inosine: my allergies got much, much better. I used to have bad allergy flare-ups several times a year, where my eyes would water constantly, making them so sore and inflammed I couldn't wear my contact lenses, plus the typical runny nose and congestion, which for me also leads to sinus headaches. Now, on inosine, these flare-ups are a rare occurrence. When it happened on our vacation this month, I believe it was because I was taking a break from inosine (again dosing is complicated, and you need to take a break every once in a while). Once I got back on inosine after my two-week break, the allergies cleared up quickly. Note to self: don't take my inosine break in the spring!

Treating Allergies
So, taking inosine has greatly reduced my allergies so that I rarely have a bad flare-up now. My younger son does, though (he's the one who's recovered from ME/CFS), and I still have occasional allergy symptoms. When they hit, there are all the usual over-the-counter remedies that you can find at the drugstore.

Your first step should be to take an antihistamine. Allergies are caused by inflammatory compounds called histamines that your immune system reacts to; antihistamines block these compounds. Most of the prescription antihistamines are now available over-the-counter in the drugstore, so you can take your pick. Claritin, Allegra, and Zyrtec are the three most popular ones, listed in order of strength. We have found Zyrtec to be most effective for us. I take it every night since my allergies are year-round, and my son takes it when his allergies flare-up. Note that the white Zyrtec pills (and very often, any pills that are white - read the labels under Inactive Ingredients) use lactose as a filler, so be sure to get the gel-caps if you are dairy intolerant.

Our doctor explained that there are 2 histamine pathways in the body, and most of these antihistamines only block one of those. Good old Benadryl (diphenhydramine HCl) blocks both pathways, which is why it is so effective...but alas, it knocks most of us out. My husband and son use it at night when their allergies get bad. (Note that I am using brand names here, but most of these drugstore products are now available in cheaper generic versions).

And, of course, you can treat allergy symptoms with decongestants, nose sprays, eye drops, and other remedies aimed at easing symptoms. We usually add a steroidal nose spray to our Zyrtec when things get bad - my son has a prescription one, but again, many of the ones that used to require a prescription are now available over-the-counter. Finally, we take Mucinex anytime any of us is congested - for allergies or other reasons. Mucinex thins mucus secretions which helps to prevent them from becoming infected. Back to the immune dysfunction in ME/CFS - since we are extra-prone to getting bacterial infections, like sinus infections and bronchitis, we take extra-strength Mucinex round-the-clock when any congestion is present.

In addition to the usual remedies in the drugstore, our dietician suggested an herbal supplement called Quercetin, which is known to have an anti-inflammatory effect and block histamine release. She was right - I found it to be fairly effective in my arsenal when allergies flare-up. At those times, I take 2 capsules 3 times a day, between meals. The rest of the year, I keep it in the cupboard.

What About Allergy Shots?
A lot of people have asked me whether they should try allergy shots. That's a decision for you and your doctor to make, but it's not a recommended approach for most people with ME/CFS. Vaccines, including allergy shots, are designed to stimulate your immune system. In the case of allergy shots, the strategy is to start with tiny amounts of what you are allergic to and gradually increase until you become less sensitive to it. The problem is that our immune systems are already WAY over-active against allergens, so further stimulating them is not usually a good idea. It is quite likely to result in a crash or relapse after every shot and perhaps even a permanent or long-term worsening of your condition. In fact, I am pretty sure that allergy shots were what triggered my ME/CFS to start or at least were a primary contributor. I got ME/CFS shortly after starting allergy shots, and I believe - in hindsight - that those helped to overload my immune system to the point where it just "broke." So, talk to your doctor (preferably one who understands the immune dysfunction in ME/CFS), but allergy shots are probably not a good idea for most ME/CFS patients.

So, those are our approaches: first, do what you can to normalize your immune system to reduce your allergic response, then treat allergies with over-the-counter and herbal remedies, as needed. As I mentioned above, the inosine has made the biggest difference for me...and I will not make the mistake again of going off it in the middle of the worst of allergy season!

Have you found anything that helps your allergies?


Note: This post contains affiliate links. Purchases from these links provide a small commission to me, to help offset the time I spend writing for this blog, at no extra cost to you. Note that this is an excellent price on Mucinex at Amazon - I usually get ours at the drugstore but ordered it as soon as I saw how cheap it was here!