Monday, August 26, 2013
As is often the case I have been meaning to write a comprehensive blog post for awhile but for now will write some notes.
I am always looking for a model that covers all of my symptoms/test results and can also explain the differing symptoms that other people have. I think gut bacteria-gone-wild is the best model.
From my perspective, Ken Lassesen has the best explanation (see: http://cfsremission.wordpress.com/)
A stable dysfunction of gut bacteria can explain every symptom that I have. It can explain chronic yeast and viral infections as well.
As I've mentioned in previous posts, Align probiotics work much better for me than any other probiotic. Guess what probiotic was found in a recent study to lower TNF-a and IL-6 in CFS patients? If you guessed Align (B. infantis 35624) you win! http://www.medicalnewstoday.com/articles/264719.php
To get even more technical, check out http://www.jimmunol.org/content/181/2/1438.full for a discussion of how gut bacteria can affect mast cells, which as I've discussed before release a lot of the inflammatory mediators that have been found to be high in CFS.
More to come once I finish a project I foolishly said yes to before going into remission like Ken.
Friday, June 28, 2013
Since I got sick I have had some allergic-like reactions that don't seem to be true allergic IgE reactions. They usually consist of burning eyes, a swollen tingly face, some dizziness, and a stuffy nose. Sometimes my lips and tongue are swollen but I never feel like I can't breathe at all (at least, not more than I do normally.) It took me a long time to figure out the pattern as it seemed random.
I appear to be having problems with high histamine foods. I finally figured it out after I had another reaction to smoked salmon, one of my favorite foods even though I can't enjoy it on a bagel with cream cheese any more. I react worse to smoked fish than I do to mold. I also react some to dark chocolate and tomatoes. Histamine levels are the one thing I see that tie the foods together and it fits well with the mast cell reactivity theory but I am always open to other explanations. I don't feel well when I drink wine but there are multiple potential causes for that.
Soooo... I am trying a low histamine diet. It's tough for me to combine with paleo (no more avocado or smoked fish!) but it's nice to have a clear nose and a less swelled face. Eventually I will try out some of the potentially high histamine foods so that I am not restricting foods needlessly. Lots o' links below and there may be a more-organized post in the future.
Da man Chris Kresser talks about histamine intolerance
research article on histamine intolerance
That paleo guy talks about histamine being a problem for some paleo peeps:
Individual with histamine intolerance
Note: Avocados and spinach are somewhat high and smoked meats are very high. Fish and meats have to be very fresh.
I like this summary of a low-histamine diet from an individual with CFS and MCAD
Overview of a restricted diet for Mastocytosis
http://www.mastocytosis.ca/symptoms.htm / http://www.mastocytosis.ca/MSC%20HT%20Restricted%20Diet%20Nov2012.pdf
Good overview article
Testing sensitivities to other chemicals:
Thursday, June 20, 2013
My history of known Mold Exposure/ significant water leaks along with health issues that arose at the same time (coincidental or not):
Age 2-4 Every time it rained the basement (where I spent much of my time playing) flooded. Family moved due to flooding issue. Health: No known issues
Age 4-6 More flooding in the next house
Age 8-12 Several major water leaks in townhouse due to faulty roof. Water poured down walls. Family had to replace bedroom furniture due to room flooding. Health: Started having severe dust allergies diagnosed by doctor.
Age 23-24 When we first moved in the carpets were wet and covered in plastic. Slept on floor for the first week. The upstairs bathtub constantly leaked. At one point part of the 2nd floor roof fell into the 1st floor due to water damage. Health: Gained ~20 pounds in first few months living there despite not changing eating or exercise habits. Started feeling constantly dehydrated despite drinking a lot. Had frequent colds and flus, although that started in college.
Age 28-31 Lived in Florida. House had some mold issues that increased after 3 hurricanes in 2 years. Actual mushroom grew out of the closet ceiling where there was a constant leak. When my brother knockd down a wall he found black and green mold everywhere inside. Visited (very awesome) grandmother several times a week. She didn't use A/C. Her house had visible mildew on the walls, especially in the living room and kitchen. Health: When I visited my grandmother's house I would suddenly feel incredibly tired and frequently napped for 4-5 hours despite having slept a full night the night before. I started to feel tired all the time and felt like I never could fully concentrate. Had to drink coffee every day despite sleeping well.
Age 31-33 Started a job that involved working from home in San Francisco. House was very well-insulated and often had condensation on the windows. Unbeknownst to me there was mold in the walls. Health: I couldn't sit up to work any more and was working from bed. My concentration got worse. When I needed to get something done I would drink a Red Bull and could temporarily feel like my old self. Leaving the house started to be very difficult. My digestive system got slower and slower. I developed GERD. My legs started feeling like it was being pricked by electric needles. Eventually caffeine stopped having an effect, my head was permanently cloudy, and I had CFS.
Wednesday, May 29, 2013
My gut symptoms started before my neurological ones; I find it frustrating that most doctors still appear to think that "IBS" is caused by anxiety when the causality is probably the opposite.
Friday, March 15, 2013
There is a detailed discussion of purinergic signaling and how it could connect to Chronic Fatigue Syndrome on a 2010 Bulletin for IACFS/ME, so this isn't a novel hypothesis.
Tuesday, December 18, 2012
Tuesday, October 16, 2012
Mast cells primarily live at our bodies' interfaces with the outside world, with the GI tract and the skin being especially important locations. Mast cells are key players in allergic reactions, in which they release histamine. But mast cells also release 200+ additional mediators that can cause pretty much every symptom that is part of the CFS symptom spectrum, ranging from POTS to GI problems to cognitive dysfunction. Some of the mediators released by mast cells include norepinephrine, IL-4,IL-5, VEGF, IFN-α and TNF-α, all of which have been implicated in CFS and POTS.
Mastocytosis is the best known and characterized of the mast cell disorders, but other disorders are getting to better understood. People with mastocytosis have more mast cells than normal. In general, people with other mast cell disorders have a normal number of mast cells but the mast cells either selectively release more mediators or degranulate much more often than they should (in which case they release all their mediators at once.)
It is important to note that having allergies is not correlated with having a mast cell disorder- the same percentage of people with mast cell diseases have allergies as that of the general public. Allergies activate mast cells via IgE antibodies, whereas in mast cell diseases the reaction is more direct. There are a wide range of potential triggers including heat and cold, foods, UV light, and chemicals. In my case I think mold and formaldehyde are key triggers. Pathogens can also trigger mast cells via Toll-like receptors, so an ongoing infection could be inducing symptoms. 1
Dr. Lawrence Afrin is a hematologist at the University of South Carolina. He first learned about mast cells disorders when he treated a patient whose symptoms could not be explained by any disease with which he was familiar. The patient suffered from extreme fatigue, dizziness, chills, nausea, and labile blood pressure and pulse. She had been sick for more than decade and gradually getting worse. Instead of dismissing the patient as many doctors would, he decided to do whatever research was necessary to figure out what was wrong with the patient. He eventually figured out that mast cells could underlie all of her symptoms. After running many tests, he prescribed a daily dose of Gleevec for her and within 2 weeks she woke up one morning and all of her symptoms were gone. Not lessened, but gone. Gleevec is not magic for most patients though- doctors have to be creative about trying out different tools in their arsenal and usually start with high-dose antihistamines vs. leukemia drugs.
Dr Afrin walks through many more case studies in his presentation hosted by the Mastocytosis Society of Canada. He also talks a lot about disease presentation-- I found myself nodding repeatedly when reading about the various symptoms he has encountered in just a few years. Testing can be complex because of the challenge of finding the aberrant mast cells or catching very ephemeral mediators, but there are some helpful tests out there.
The presentation is long and technical but I think is well worth a read. Dr Afrin is obviously brilliant; I think that he and Dr Theoharides are onto something when they talk about how aberrant mast cells can be behind many mystery diseases like CFS, fibromyalgia, and Gulf War Illness. From what I can tell, the current mainstream theory is that there are various induced mutations in the receptors on the mast cells which cause their deleterious behavior.
Dr Afrin can't work directly with patients unless you can see him in person, but he is happy to work with local doctors to suggest testing and treatment options. If you have an open-minded doctor, (s)he can contact Dr Afrin and email@example.com. He is very responsive and I have read several accounts of him providing detailed suggestions to doctors. If you can get out to South Carolina you could also see him in person. If I were to share a document with a doctor who I wanted to educate about mast cell disease, I would probably share Mast cell activation disease: a concise practical guide for diagnostic workup and therapeutic option.
In my next post I am going to talk about some specific symptoms that Dr Afrin has seen in patients and how they relate to mysterious CFS symptoms.
1 "Infectious agents also stimulate mast cells directly through Toll-like receptors recognizing molecular patterns common to microbial or viral pathogens. Human mast cells have been shown to carry Toll-like receptors 1 to 7 and 9 and respond to Toll-like receptor stimulation through release of cytokines and leukotriene C4."- http://people.musc.edu/~afrinl/MCAS_Primer/Akin%20et%20al%202010%20MCAD%20Criteria.pdf↩