Saturday, January 2, 2010

Treating primary immunodeficiency (and ENS)

I believe it is critically important that we make every day count, because time will come and go, and I am sure I speak not only for myself, but for many ENS sufferers, in that we want to live our lives fully and not be all-consumed by our condition. However, the catch is our condition can be quite-consuming and it takes focusing on our condition to be able to treat it fully and move on. So we do need to treat it - to a point we can accept our condition. Then move on. I have 4 young children and they are very much a blessing to me and my family. I want to spend time with them each day. In that light, I made three new year's goals for each day:

1) Spend time outside each day - OK, today it is frigid out, but most days...
2) Read the Bible and spend time with my family in devotion and prayer each day.
3) Enjoy good health each day. Exercise each day. Have fewer than 4 infections in 2010.

Keeping in line with the purpose of this blog, it is this latter goal that is the focus of this blog post. I want to have fewer than 4 infections in 2010. In 2009, I had 7 sinus infections, the majority of which required short-term antibiotic usage. Generally, my children get the stuffy nose first, I get it 3-5 days later due to exposure (I also work in a school), and then my infection lingers for two weeks unless I treat it. I should probably state, though, that not all ENS sufferers suffer from repeat sinus infections. Only some do. However, having removed turbinates means our defense system is weakened, as the turbinates are the main mucus-producing organs of the nose and provide much surface area that helps to collect germs and transport them to the stomach where they are killed with stomach acid. This is a very important function of the turbinates. To compensate for this function being removed, I irrigate my nose on a daily basis. On top of this, I also have much scarring of my sinuses, particularly my ethmoid sinuses, due to the 1997 turbinectomy. To make matters worse, I have a specific antibody deficiency to the pneumonia bacteria, which is called a primary immunodeficiency disorder. This deficiency is considered "mild" as my body was able to produce protective antibodies to 14 (of 23). This is not good protection.

So here's what I seem to have: A combination of empty nose syndrome and a mild primary immunodeficiency disorder, that manifests itself as chronic sinusitis. The good news is I primarily catch sinus infections in the fall and spring, although they can creep up any time if I'm not careful. How am I careful? a) I do both nose and throat irrigation on a daily basis. b) I eat right in line with my food sensitivities ( as well as following an anti-candida diet. 3) I strive to get the best possible sleep on a regular basis (I use a combination of humidified CPAP with an oral appliance) 4) Exercise daily. 5) I drink plenty of liquids, almost exclusively water 6) I drink hot tea (or hot water) with lemon and honey 7) I take a few potent supplements, but am on no medications. 8) I get craniosacral therapy weekly, which also helps with drainage. 9) I get allergy shots every other week.

This year, my goal will be to have fewer than 4 sinus infections. I plan to make this a reality. It won't be easy, by any means, but I believe it is very possible. I have attacked some of the most challenging health issues of mine, and succeeded in 2009 with flying colors.

2009 health successes:

1) That's right, it was the first year in probably 14 where I did not have severe ear symptoms, where it has felt as though my ears weighed 5 pounds at different points in time. I later learned this was TMJ, by myself, which was confirmed by a doctor later. I have been doing jaw massages and this makes a real difference. If you have TMJ or certain chronic pain conditions, I highly recommend the Trigger Point Therapy Workbook, Second Edition:

2) I also use the humidified CPAP (despite doctor reluctance, as I am thin and young, so I don't fit the typical mode of an apnea patient) and this makes all the difference for my sleep. A second issue attacked. My parents commented how I seem healthier than they have ever seen me. I accredit this to the CPAP, the singlemost beneficial move I made for my health this year.

3) In 2009, I increased my Vitamin D level from 29 at the start of the year, which is a mildly deficient level, to near 80 by the end of the year; the former amount is considered deficient while the latter is considered cancer-fighting; 50 to 65 is considered "optimal." Some doctors prescribe 50,000 IU of Vitamin D/week for patients. I don't think that is a good idea unless if blood tests show deficiency and the response to the pills is monitored. A Vitamin D level higher than 100 is considered toxic, and that can be damaging as well. In my own situation, because my Vitamin D level was near 80, my doctor instructed me to decrease supplementation from 5,000 IU to 2,000 IU/Day. Anyway, a third issue attacked.

My primary immunodeficiency:

Now, as to the primary immunodeficiency, I pose various questions on how best to treat it so I can enjoy fewer than 4 infections in 2010 (and try to answer them myself!!!). Yes, I try to answer them myself. Here's the game plan:

1) I will continue to follow an anti-candida diet, along with recommendcations from the ALCAT testing.
2) I will continue to use the humidified CPAP in combination with the oral appliance.
3) I will continue to exercise daily, or at least 4 times per week. Simple walking - or a combination of walking and running - might suffice.
4) I will continue to do both nose and throat irrigation using the Hydro Pulse, twice per day.
5) I will continue to follow good hygiene practices - brushing my teeth twice per day, flossing, washing my hands for 20 seconds. Et cetera.
6) I will continue to drink hot water or tea with lemon and honey, such as green tea, regularly.
7) I will maintain a solid Vitamin D level.

As for monitoring the deficiency, I have had other thoughts on how to beat it (if that is possible).

Question #1: Is it possible that because my deficiency is mild, I may someday produce enough antibodies that my antibody deficiency to the pneumonia bacteria may not be a deficiency anymore?

Answer #1: Yes, I believe immunological levels can change. I can't assume this for a fact, but I believe strongly that someday my antibody levels to pneumonia may be normal. One way to do this is by getting pneumonia shots once or twice per year and monitoring my antibody levels to the shot. Although pneumonia shots are normally administered only once every 5 or 10 years, getting more shots can't hurt; you can't over-immunize. In fact, the reason why people don't get pneumonia shots more often is because they are reported to be less effective if given more often. At least that's how I understand it. I'm not a big fan of vaccines due to the toxic ingredients in many of them such as mercury or thimerosal, but a shot that gives me antibodies to pneumonia seems worthwhile. It also seems worthwhile to monitor my body's response to the shots, so I understand my current levels of antibodies.

Question #2: I usually always try to fight off infections on my own prior to resorting to antibiotics. Yet after waiting two weeks and, once I notice the colored mucus are not resolving or has not been eradicated, the only way I effectively fight the infection is antibiotics. Should I be considered for prophylactic use of antibiotics (e.g., low-dose penicillin) only during times of the year when I catch infections - spring and fall?

Answer #2: I should probably be considered for preventative antibiotics, because although most colds start as a viral infection, there is generally a secondary bacterial infection. People with primary immunodeficiency needs antibiotics more than those who have a good defense system. This reasoning goes against the grain of thinking of most doctors who believe it is better to "wait it out," concerned about resistant strains of bacteria developing. Fact is, despite theories on resistent strains, gut disturbance, etc., in practice side effects are few among patients administered low-dose antibiotics. Nevertheless, as should be noted, antibiotics are not without side effects, such as killing the good bacteria in the gut or a fungal infection. That said, perhaps a better question to ask is as follows:

Question #3: What is the most proper use of antibiotics for a patient with primary immunodeficiency?

Answer #4: The treatment for me, I believe, rests somewhere between the extremes of using intravenous immunoglobulin (IVIG) treatment - a blood infusion of plasma proteins to give us the necessary antibodies every 3-4 weeks - and preventative use of antibiotics. In fact, I think it should depend on how well I as a patient respond to the pneumonia shot. If I have a partial or no response, then antibiotics should be administered sooner rather than later with colds; if I have a good response with a real increase in antibodies, then perhaps I will have fewer infections in the following year and can expect not to have to use antibiotics as much. Here's my thought for a game plan with antibiotics: Wait a week after coming down with a cold, have the doctor do a nasal smear or nasal culture for both fungi and bacteria, and that will provide objective information to determine whether to use antibiotics or not. Problem is this is not cost-effective medicine for doctors to administer smears or cultures; they would rather make educational guesses when prescribing antibiotics, rather than get to the bottom of the issue.

Question #4: Should I be considered for antibiotics in irrigation?

Answer #4: Absolutely, but only for local infections in the nose and throat ( A systemic infection that is severe requires either IV antibiotics (although this will likely lead to fungal infections) or, more likely, oral antibiotics, which sometimes needs to be prescribed for 3-8 weeks. Antibiotics in irrigation will go directly to the site of infection, which in my case is usually the nose or throat, and the important point is it will bypass the stomach. The problem is finding a doctor who will prescribe it. More than likely, only an ear, nose and throat doctor will prescribe it.

Question #5: Are antibiotics effective for patients with primary immunodeficiency?

Answer #5: Yes, for some patients they are effective - and necessary. They should be taken with probiotics at opposite times of the day. Yet a review of history shows us that increased use of antibiotics in our country over the past 50 years has led to more diseases and sinus infections, not less. The antibiotics in the food we eat doesn't help much either, when we talk about resistant strains of bacteria.

Question #6: Do I need IVIG?

Answer #6: Because my body can fight off infections with antibiotics, IVIG should not be necessary. In my opinion, it should be reserved for patients who do not respond to antibiotics and those with life-threatening conditions. Although IVIG can correct the deficiency of antibodies, and this is an important therapy for some people, it comes with risks, which include side effects during administration of IVIG and risks of harming the liver and kidneys, which is primarily for patients with neurological disorders. One healthcare provider commented to me how she knew someone who had multiple sclerosis and had IVIG and came down with hepatitis and is on the list for a liver transplant. Wow. This happened just 2 1/2 years ago, although by most accounts on the web, according to "trusted medical authorities," IVIG is supposedly considered safe.

Question #7: What other strategies can I consider for preventing infections?

A) Those with silver amalgam fillings might consider doing a heavy metal detox ( and getting them replaced with non-toxic fillings. This is what I am planning to do this year. The American Dental Association denies the mercury in these fillings is toxic because amalgam is cheap and durable, yet other countries have recommended limits to amalgam fillings out of concern of toxicity. 15 micrograms of mercury is released per filling, per day, passively and actively, leading to toxic levels for those adults with 4 or more fillings.

B) Get your immunoglobulin A (IgA) levels monitored. Immunoglobulin A (IgA) is an antibody which plays a critical role in mucosal immunity. More IgA is produced in mucosal linings than all other types of antibody combined. I am going to ask my primary care doctor to do this when I see him in January. According to one healthcare provider I went to, Epi Cor (ttp:// is reported to increase IgA levels fourfold for those who are deficient.

C) Detoxification - colon and liver, especially. I personally believe that taking psyllium husk twice per year in water to clean out the colon is good medicine. I also think doing a simple liver/gallblader flush using apple juice once per year is also important (

C) Consider use of supplements that have been shown to be effective at boosting immunity. Some are natural antibiotics as well. Examples include:

This is obviously just a short list of the vast array of products that can boost immune system. I plan to take just a few of these immune boosters in combination with all else that I am doing, with the hope that I can have fewer than 4 infections in 2010. I am planning to have a healthy new year with my family! if you have been diagnosed as having an immunodeficiency disorder and wish to comment on this blog post, drop me a line!

Now I'm going to practice what I preach and go exercising for half an hour. I wish all who read this a very happy, healthy new year.

All the best,


1 comment:

nose lift philippines said...

I definitely agree that the catch is our condition can be quite-consuming and it takes focusing on our condition to be able to treat it fully and move on. Its really a good subject to explore.