I am pretty excited because Dr Fred Hui said that I don't have to see him for 6 months! I was seeing him twice a week in 2011 and have had hundreds of visits to the clinic for treatments and reviews. This will be put into context later but right now I just want to bask in the warmth of success.
His office is close to 300 km away and having fewer appointments is going to be great.
I have always been a skin-writer = dermographia aka dermatographia. Not as bad as some people and with a fair amount of variation day-to-day. Along with this there were a few hives. In the one to two hives every 1-4 week range.
I learned about this in 1986 when I had 7 moles removed from my back.
In March of 2015 I tested positive for the DNA of mycoplasma and HHV-6 (herpes 6). Virtually everyone has had exposure to these things but for some reason my immune system decided to let them stand up and walk around. 71% of people with CFS will have a stealth infection and some of us have more than one.
I took Doxycycline every day for 8 months. This successfully treated the mycoplasma and in turn this allowed the immune system to put the HHV-6 back into remission. Herpes zoster can come back in the form of shingles, and in the same way herpes-6 can come back as fatigue. HHV-6 is roseola in kids.
I have a lot of skin problems folliculitis, eczema, psoriasis, occasional fungal infections and an unstable histamine system. An example of this is that I was getting regular rashes after showers where 2 ECG leads were placed in 2012. Yes, I am aware that sounds crazy. The leads were in place for 8 hours and left glue behind that I was slow to deal with.
Anyway, towards the fall of 2015 and after a few months of antibiotics I started getting hives every day. And then twice a day...then up to four times daily. I was a mess. Antihistamines worked but they shut down my prostate. The genitourinary tract, gut, lungs and skin all have an abundance of Mast Cells.
If I ever figure out how to add photos I'll come back and show you what I mean when I am talking about a breakout of hives.
So, yes, I have a history of an unstable histamine system as evidenced by dermatographia. But it was clear that the antibiotics had messed me up. I don't have a colon. My small intestine is connected to the rectum. I don't have an ileocecal valve anymore and there is nothing to keep lower tract bacteria into the small intestine....the door is open.
This is important and there is a diagnosis related to this called SIBO or small intestine bacterial overgrowth which goes hand-in-hand with leaky gut.
The small intestine is just about sterile with 10,000 bacteria per ml. It sounds like a lot until compared to the large intestine that has about 3 billion bacteria per ml. When these lower tract bacteria migrate up the pipe they have the potential to change the form and function of the lining of the small intestine.
This is important for guys like me. DAO is the enzyme that breaks down histamine in food and also that which is produced by gut bacteria. It is found principally in the lower ileum and upper colon. Out of the gate, I am missing part of my factory and I have a genetic alteration of DAO+-. This means that it doesn't work quite as good as other people's.
When Sterling Hill read my 23andme results she predicted a histamine problem some day.
Here is something I found on the net: Chris Kresser: "I think the health status is one factor that determines sensitivity [to histamine]. But there are other factors that don’t necessarily relate to current health status, which are genetic. So if somebody has homozygous MAO mutation and they’re also homozygous for MTHFR mutation and they have very poor methylation because of that, and then they also have a defect in diamine oxidase, an inability to break down histamine once it’s produced, and then maybe they even have defects that lead to overactivation of mast cells and production of histamine, that person’s probably going to be pretty sensitive to histamine even if they’ve got everything dialed in. I don’t know how many of those people there are that have that unique constellation of things together; probably not that many. But they may always need to be careful, for example, with fermented foods, and some of the foods that we’re going to talk about that are high in histidine, and therefore, histamine. And/or they may need to use some natural antihistamine support or take some diamine oxidase as a treatment."
I am one of the few with this "unique constellation" of factors. Plus, I don't have an ileocecal valve.
We keep bacteria out of the ileum a) with this ileocecal valve, b) the normal action of peristalsis pushing things in the other direction and c) the lower ph of the small intestine. I decided to kill off some of the bacteria with Humaworm which is a parasite cleanse and then to follow it up with coconut kefir.
The lactobacillus in the kefir would acidify the small intestine and make it a less welcome place. Or at least that was the theory. I decided to ignore the fact that it is a fermented food which is the number one thing to be excluded in a "histamine diet".
While I was developing this idea, food allergy testing came back and I added dairy and eggs to my rather extensive list of things I can not eat. Stopping eggs helped a lot with the eczema.
To speed this up a bit...my idea worked. Whether it was from lowering ph in the small intestine or the healing effects of coconut, the hives went away and the prostate settled down with the PSA dropping from 5.6 to just a bit above "normal" range.
Initial concerns about the 700 calories a day from the saturated fat in coconut was short-lived as my blood lipids came back that they have never been better! I used to have moderately high cholesterol before moving against mercury.
The hives come back in 2 to 3 days if the coconut kefir is stopped. The prostate starts to complain within a day. This is a form of rebound inflammation in my opinion.
I am humbled by all of this. I haven't had a lot of breaks in terms of health, but I did this time. I came up with a theory that worked. I seem to have a long-term treatment for my Mast Cell/Histamine problem. I wonder if it would work for people with intact digestive tracts?
Blog entry posted by stridor, Apr 4, 2017.
About the Author
I carried a heavy mercury burden for decades. I won the fight against Bipolar Disorder and am winning the fight against CFS and histamine issues. I did not escape unscathed however and will carry the scars of my exposure to mercury for the rest of my life. I share my story knowing that few walk my path. I hope however that some of the ideas and approaches that I used to emerge from the shadows 90+% recovered will be helpful to others. My life was salvaged by Dr Google and the kindness of strangers, just like you.