Goodbye for now

I am currently striving for optimal health, which I am seeking through a combination of cardiovascular training, resistance training, stretching, and cardio-interval training, in addition to following a strict diet, enjoying good quality sleep, and simply following a healthy, active lifestyle. I am running a half-marathon on Sept. 11th on behalf of CareNet Pregnancy, which should be a reasonable feat as I ran 10.2 miles just a week ago and did not faint toward the end! I am presently seeking healthcare services through a chiropractor as well, and I find these adjustments to be beneficial. I will always have ENS symptoms, but I have learned to cope well and have effectively mitigated my most significant health challenges.

The road from not-so-good health to good health has been long and challenging, but the road from good health to optimal health is far easier. This concept is one that an ENS sufferer might readily appreciate, but others will find hard to understand.

I have thoroughly enjoyed corresponding with many ENS sufferers and friends, reputable ENT physicians, and even attorneys throughout the United States. It's been an exhilariting experience writing a book and having the privilege of this correspondence. I feel that I have benefited as much, if not more, from this correspondence than many of the people with whom I have talked. At this point, I have shared a lot of what I know about ENS through this blog (do a search for updated ideas since my book was published), through numerous phone calls, and even by occassionally posting some thoughts at http://www.emptynosesyndrome.org.

I confess I am entertaining the possibility of writing a future book, as the knowledge base of ENS has expanded significantly since my August 2007 book, but I think the main purpose of "Having Nasal Surgery?" was to raise awareness and I think it accomplished that. I am not totally clear on what a future book would accomplish. ENS sufferers need a cure and technology has made this available through tissue engineering, but the issue is politics; basically, ENT doctors protecting a lucrative nasal surgery business and a lack of interest from the public, doctors and/or scientists in helping those afflicted with an iatrogenic ailment. This is why a cure is not available right now, in my opinion. Anyway, writing a book is a very time-consuming endeavor and it's a sacrifice, and sharing knowledge doesn't always encourage people to take responsibility for their own health. If you are reading this blog, please consider me in prayer on the issue of whether I should write another book or not. This is something I will prayerfully consider over the next year, but in the meantime I plan no more blog posts, posts at the forum of emptynosesyndrome.org, or even correspondence. I do not feel these are a good use of my time, as there are other areas in my life in which I can be much more productive and are in need of my attention (e.g., my family, the Bible).

I wish all who read this blog excellent sinus health. Goodbye for now.

Problem with emptynosesyndrome.org

If you attempt to go to http://www.emptynosesyndrome.org, you will find a site that says that it is currently unavailable and directs the owner of the site to call a certain phone number. That number is the billing office of godaddy.com, the domain that hosts this website. I found this out as I called the number to possibly see if I could pay for the annual renewal fee, but I needed to supply either a PIN or part of the current credit card on file, of which I had neither. Apparently, the webmaster has not paid the renewal fee (which, based on past experience, is on the order of $5-$10). As a result, people who frequent the site will not be able to browse the forum, brainstorm ideas, and share in a supportive atmosphere with other sufferers. What a shame. I feel bad for those who do frequent the site. Hopefully that issue will get resolved soon for the sake of many. ....UPDATE 7/17: You can get to the emptynosesyndrome.org website and forum by googling "empty nose syndrome" and then selecting a cached version of the site.

In the meantime, you can email the webmaster at webmaster@emptynosesyndrome.org to look into the issue, as it might just be that he or she meant to pay for the renewal, but forgot.

I am going to be on vacation in two days (Cape Cod) and I can't wait. My nose is getting better by the day, and I have been using http://www.nosebrace.com to open up the right nasal airway when it feels too narrow (Remember, sometimes my right nostril is too narrow, which might be a result of post-surgical swelling that takes upwards of a year to subside, while other times my nasal breathing is fine.) This nose brace has been working beautifully to correct this (hopefully temporary) issue, and my nasal problems are quite minimal right now as a result. I am thankful and looking forward to breathing the air in Cape Cod by the ocean. I also have been running a lot in my spare time, as I am preparing to run a half marathon in September on behalf of CareNet Pregnancy. So I am getting in shape and feeling great. I hope you are as well....

one month post-op lateral wall implant

It is a little over one month post-op and my feelings on the implant are pretty consistent with my previous comments.

There definitely has been improvement from this surgery with respect to my breathing, and I accredit this improvement from having the lower septal implant removed. It's overall less obstructive in my right nostril, but it still sometimes feels as though my breathing is pushed to the left or somewhat obstructive (while other times it feels fine). Prior to the lateral wall implant, I did not have this sense that my breathing was pushed to the left, but I did have an even greater sense of obstructiveness (due to the lower septal implant). Consistent with how it was before this most recent surgery, however, this sense of obstructiveness seems largely related to my stress level or level of fatigue; the more fatigued I feel, the more obstructive the implant feels. This sense of obstructiveness also relates to air quality such as being in a car with dry, recirculated air (when I would put in a max air nose cone or nasivent tube to help with getting enough air in my right nostril). All said, I do think there is a neuromuscular component to my symptoms, which is perhaps why I responded so well to craniosacral therapy. I am also going to a chiropracter in the near future, and anticipate that will help as well.

All factors considered, though, there does seem to be small improvements in my breathing from day-to-day. Sometimes, like right now after a 3 mile run this morning, my breathing feels totally fine.

Getting my lower septal implant removed was a good decision for me and strengthens my belief that that is not the best place for an implant for those missing their inferior turbinates. Thankfully, Dr. Houser's trend is to do the lateral wall as well. I do think that is the correct physiological location for an implant, and I would caution anyone reading my posts and interpreting the effectiveness of the lateral wall implant to recognize that I changed two variables at once (took out lower septal implant [while leaving the upper septal implant in place] while putting in lateral wall implant). So unlike me, just proceed scientifically with the implants and you should be fine.

Should the lateral wall implant continue to resorb, then I will be happy and let it be. Should I continue to still experience some mild obstructiveness in my right side and a sense that my breathing is pushed too much to the left, then I may proceed to get the lateral wall impant reduced in the office. I will have to give it a good half year at this point before I can make any further decision, if at all, as it takes many months for the lateral wall implant to resorb. I don't think I would get it removed because of its already small size. It was a good decision that only 2/5 of a 2 x4 cm sheet was used.

12 day post-op update

An anonymous writer asked me to provide an update on my nose. I wrote the following at emptynosesyndrome.org at 12 days post-op. (At present, I am 20 days post-op, and I am feeling better every day!).....Below is what I wrote:

I am about 12 days post-op from my lateral wall implant surgery.
Thankfully, I seemed to have healed well from the surgery, with only minor throat pain that quickly resolved itself within days after surgery.

This early post-op, I cannot gauge the long-term benefit. Overall, it feels OK and improved from before the surgery, but a primary issue I have had is that my breathing sometimes feels like it is pushed "to the left" as a result of the lateral wall implant, making breathing uneven. (Remember, now I have both a lateral wall implant and an upper septal implant.) My breathing was uneven before this implant surgery as well, and the nasal cycle contributes to this uneveness in breathing. And of course, my lateral wall implant will likely resorb by around 50% over time, so I anticipate my breathing will feel closer to normal and more even as times goes by. I noticed an improvement in eveness today over recent days, and I am thinking my allergy shots yesterday might have played a role in this respect. According to Dr. Houser, it takes 9 months for the lateral wall implant to reach its permanent size.

But this much I do know: a) the lateral wall implant is a much more natural place for an implant and physiologically correct and b) a lower septal implant can be obstructive and un-natural, so I am very confident that removal of my lower septal implant was also a correct decision. Do note: some people can tolerate the obstruction caused by the lower septal implant, as it still represents improvement over their previous symptoms. I am also well-aware that implants are not a cure. As expected, I can clearly tell that my right nostril will never function as perfectly as my left. I just won't have the level of humidity, nasal sensations, degree of comfort in breathing, etc. because my right inferior turbinate was significantly removed, whereas my left inferior turbinate was left more intact. What the implants will likely do for me in the long-term, if they have not done this to some extent already, is prevent erosion of my mucosa by acting to preserve my remaining mucosa. As tissue loss can lead to turbulent airflow which, over time, can lead to erosion/atrophy of the mucosa, resulting in lost nerve endings as the mucosa breaks down and becomes increasingly metaplastic, I can be thankful my implants will help protect against that. If you do not have an implant, then I strongly encourage you to do techniques to preserve the mucosa so your nose does not become atrophic.

I am going to wait about a month or more before providing another update, at which point I can hopefully provide an update that might in fact closer reflect the long-term impact of my lateral wall implant. So expect an update around July 10th, give or take a few days.

One week post-op update of lateral wall implant

It is only one week post-op so I am still not in a position to judge the long-term benefit, but I do feel more and more confident each passing day that I made the right decision and will not need further implant surgery - to remove or add Alloderm. This does not mean that my right nostril is perfect or nearing 100% improvement. I have lost nerve cells in my right nostril from my 1997 turbinectomy, and having so much removed inferior turbinate means this nostril will always have some degree of dysfunction. But at least with more orderly airflow, thanks to the lateral wall implant, I can be overall more comfortable in my breathing - and that's the point where I can accept it for what it is and move on in my life.

I think I made a good decision with removing the lower septal implant. It feels much more natural when I breathe to have the lower septal implant removed, which convinces me this was the right decision for me. (I actually think I have been breathing better, too, in my sleep. I am not waking up tired despite not using the CPAP since the surgery, as I need to allow my nose to heal.) The lower septal implant was sort of like breathing against a large bump for me - and it was obstructive at times.

I do think the upper septal implant, which compensates for my middle turbinates, is fine now, and might be a good option for people missing their middle turbinates. Dr. Houser noted there is even air space in this location of my nose on both sides.

Re: the lateral wall implant, I also believe this was a good decision. There's still crusting and I am sure it is swollen and will resorb over time, but I am not sensing any of the obstruction I felt with the lower septal implant. It feels a bit like it has pushed all my breathing to the left, but then again, there is still some major crusting in my nose, so I expect this to go down as time passes. If anything, this lateral wall implant does seem to offer some airflow resistance as it is in the airway (but not too much like the septal implant) and it seems to direct airflow in a much more orderly and natural way than the septal implant does. In fact, there were times today when I felt like my nasal breathing was fairly normal in my right nostril. Now, Dr. Houser only put in 2/5 of a 2 x 4 cm sheet in my lateral wall, so this is a small implant. So I do think the lateral wall is best positioned for directing airflow in a natural way; I noted to Dr. Houser at the office visit prior to surgery that my right nasal breathing is more comfortable if I put my finger near the base of the right nasal vestibule toward the lateral wall where my nose would conceivably feel most empty (I say 'would' because I was saying this when I had my lower septal implant in, which made my nose feel pretty full), along the same line as the lateral wall....so the lateral wall implant made sense for me. The septal implant is more into the airway, so it is easy to see how that could help with issues of dryness, volume, and airflow resistance, but I think there is also a risk of a sense of obstruction in this location - at least there was for me and most people with whom I have corresponded. If you can accept some degree of obstruction, then its benefits may outweigh its risks for you. My initial thoughts are the lateral wall implant might not address the issues of dryness and volume as well as the septal implant can because the septal implant protrudes more into the airway, even if the septal implant isn't in the most natural location. But, for me, the sense of obstruction was too much of a trade off to gain from the moisture and volume it offered. Of course, a smaller, more conservative septal implant would lead to less obstruction. According to Dr. Houser, my lower septal implant was equivalent to 1.5 2 x 4 cm alloderm sheets.

But Dr. Houser indicated to me that his trend is to do the lateral wall more and the septal implant less, and perhaps this is because people find it a more natural location....I'll plan to post again in a week or sometime later to update on my progress with this implant.

Lateral Wall Implant Surgery

This is among my last blog posts I will write. I may provide a periodic update on the progress of my right nasal breathing as I just had a surgery yesterday, but I have tirelessly conquered so many health battles: from chronic sinus and throat infections to ear pain caused by TMJ to postnasal drip and dry mouth to my last frontier which is an improvement in my right nasal breathing (which is the subject of this post). I have found myself in disagreement with many well-intentioned, respectable doctors, have had some outstanding doctors looking out for my best interests, have pursued appropriate surgeries for myself, have fought a health insurance company (and won) that appears only interested in money rather than my health, and have gone with my gut and educated myself on how best to improve my health, and have tried numerous health remedies and strategies for treating ENS and related issues, preventative, remedial and tertiary, which usually turns out right and to my benefit. Now that I have made so much progress in my health, it is time for me to get away from doctors (and even this blog, sorry) to just focus on my family and enjoy my improved health thanks in large measure to my own efforts, and the prayers of others. This blog, however will remain for all to read. As mentioned before, I might also provide a periodic update on my improvements from this May 28th surgery. Thanks for reading and caring...

I am headed for another surgery with Dr. Houser on May 28th. I thought I would create this post for those considering implant surgery and those who have followed my progress over the years. I am actually doing very well, having improved symptoms on many fronts, but my breathing is still somewhat problematic; mainly, my right nostril feels too obstructed because of the septal implant. I could always just use afrin all the time, which does seriously help temporarily, but this clearly is not a long-term strategy and would cause rebound congestion. The septal implant feels a bit like a balloon that inflates and deflates depending on humidity, air quality, specific food eaten, and so forth. I'll plan to post after my surgery and offer a periodic update.

My main hope for this surgery is that I could have even breathing between my right and left nostril. It will involve a significant right septal implant reduction and it may include a lateral wall implant. I believe the lateral wall is a better place for an implant than the septum given its proximity to the turbinates. The nasal cycle causes the right septal implant to become too inflamed much of the time, causing a sense of obstruction and uneven-ness in breathing between nostrils, so in my opinion this drawback outweighs the benefits of the surgery - increased moisture, airflow resistance, and volume. In fact, I have corresponded with one person who had the septal implant removed and she felt it was the right decision for her. She noted that her dryness has not returned, so the moisture benefit has been retained over 9 months post-removal. Do I think I have gained from the septal implant? Absolutely, it probably has served to protect my mucosa and perhaps even help it regenerate, but my question is, is this the best place for an implant?

Below are symptoms that impact my breathing, particularly my problematic right nasal breathing (as opposed to my left nasal breathing, which feels almost normal), which are described before and after the implant, along with the intensity of the symptoms:

Symptom (in right nostril) - Before Septal Implant/After Septal Implant

Nasal Dryness -Mild/None to mild

Airflow resistance -Too little – Mild/Too much – Mild

Airflow “Sensations” -None- Severe/Mild to Moderate

Level of air space -Too open – Moderate/Too closed - Moderate

Mucus issues

*Recirculation *Fixed after maxillary antrostomy

^Postnasal drip/ recurrent infections ^Appears significantly helped by tonsillectomy

+Slowed MCC due to scarring, particularly in right sinus. +Still slowed MCC due to scarring in right sinus– will always be. No biggie!

A special thanks to TE, as we had discussed the above issues regarding implants and he helped me to see what I ultimately want from the surgery. It mirrored my own thinking, but sometimes it is hard to see the best solution when you are so close to the situation. As many of you know, he is a wealth of information for ENS, incredibly knowledgeable on implants and nasal breathing, and it was great to brainstorm with him. What is actually done (reduction, possible lateral wall implant) will be decided during my office visit on the day before my surgery. There is a chance I may have just a significant reduction to the implant, but if Dr. Houser feels he can give me even breathing/air space with a lateral wall implant, then that might be an option for me. And I am thankful to even have that option.


OK, I had my surgery yesterday in the early morning hours. I had to be at MetroHealth at 6 AM and the surgery began at 7:30 AM. Dr. Houser must be an early bird

At the office visit, Dr. Houser and I viewed the CT Scan of my sinuses taken in September 2009. Basically, it showed that I have roughly even air space between my right and left nostril in the upper portion of my nose as a result of my right septal implant, which compensates for the middle turbinates, which have been removed. So we decided to leave the upper right septal implant alone.

However, the lower implant that mirrors the inferior turbinate was bulging, and we decided to remove this to the extent possible so I could have more symmetry between my right and left side (my right side is primarily my ENS side). We also decided to add a small right lateral wall implant. It was ultimately a guess on this implant because we are both a) removing the lower right septal implant and b) adding the right lateral wall implant. So we are changing two variables at once. I tried a cotton test and did not notice much difference with the cotton, but the lateral wall is closer to the actual location of my right inferior turbinate. The nice aspect of having a lateral wall implant on the right is it is in the natural location and not likely to be as obstructive as a septal implant, plus it is smaller than my right septal implant and likely to resorb by 50%. So hopefully this will do the trick in providing me more natural, even and less obstructive breathing of the right nostril, which was basically my hope for this surgery.

Dr. Houser also identified a cyst in my left sinus, and removed it during the surgery. He does seem to be looking out for my blindside!

It's obviously too early to tell if this surgery will be a success, as I am congested and have plenty of crusting, bleeding, and swelling. It is as though my left nostril is clear as it was not operated on, while my right nostril is clogged, but this is just part of the healing process. The post-operative pain is minimal, as I am mostly experiencing it as a direct result of the breathing tube in my throat. I'll plan to write another post once I am much further along in the healing process.

Health Insurance protecting bottom line rather than my health

I genuinely wish I could state that I believed my health insurance was acting in my best interests to protect my health. Unfortunately, my health insurance company seems only interested in protecting the bottom line and doing only what is inside their contract. For people with ENS, this means a challenge to get the treatment we need. It is likely Blue Cross (and many other insurance companies) get paid more to deny surgeries than to approve them.

In desiring a lateral wall implant, a very reasonable (if not among the only) option for someone with empty nose syndrome, I have had to battle my insurance company - and, perhaps thanks in part to my persistence, I won. I have been approved for the lateral wall implant , but this was a 5-month battle, beginning in Mid-January. At first my insurance company, BlueCross, was not even going to grant me a prospective review, because I have an indemnity policy and Blue Cross stated experimental surgeries can only be granted retrospective reviews. In other words, they wanted me to go through with the surgery and stick me with the bill. I filed a complaint with the state department of insurance and, as a result, BlueCross granted me a prospective review and quickly denied the surgery on the basis of its contract which does not indicate use of alloderm in the nose; it was just a quick, knee-jerk denial, from my perspective. So I filed an appeal requesting my case be reviewed and that the doctor speak with Dr. Houser and review the literature on implants for ENS, but the doctor did neither. And denied me the surgery again.

Consequently, I filed another complaint with the state department of insurance on the basis of the doctor not granting me a fair review and I also filed an external appeal to be completed by an independent medical review board. Three doctors reviewed the case, all were ENTs and appeared to have strong credentials, and they all unanimously agreed to "overturn" Blue Cross' decision on the basis of ENS being an extraordinarily difficult condition to treat, Dr. Houser being the one doctor with experience in this area, and the implants being an effective if only treatment, although the research study is Level 4 (not a controlled, double blind study because that would be a difficult feat for any doctor to do given the uniqueness of our health condition). So BlueCross is now forced to grant me a pre-authorization on the procedure. Because ENS is so specialized and doctors have so little understanding on it, our battle to get a lateral wall implant approved is truly an uphill one. Which is a shame, as we ENS sufferers are already so limited in our treatment options.

But the point is, we can get this procedure approved if we persist in fighting for it.

Adult Tonsillectomy - a great decision

On April 19th, 2010, I had an adult tonsillectomy. I am 30 years old and have a history of chronic throat infections, as well as a diagnosis of obstructive sleep apnea. On top of that, I have had issues with dry mouth and postnasal drip. The pain from this tonsillectomy was actually quite intense for the week or so, as it was painful in my ears and upon swallowing, and tylenol just didn't cut it; I had to use the oxycodone prescribed for me to get through the first week. In contrast to what I have been through as an empty nose syndrome sufferer, however, I would gladly take a week of suffering over years of a) chronic discomfort in my nasal breathing, b) chronic throat infections, and c) ear pain caused by TMJ and mucus buildup near the base of my eustachian tubes. Although intense for a short time, going through with an adult tonsillectomy was cake compared to my other health issues I have been through.

The good news is this was an excellent decision, as I have already been enjoying the benefits. My mouth has been more moist, I seem to have less postnasal drip, and I recently did not incur a throat infection my son had had. (Prior to the tonsillectomy, I would always catch his cold and it would linger indefinitely). Needless to say, I believe it was a good decision and I feel thankful to have had it.

Like with many of my health decisions, I have had to be my own doctor. No doctor recommended the tonsillectomy to me. I find that, while doctors can provide a valuable source of information and I respect them for their expertise in their respective fields, my gut is usually correct and I need to educate myself if I want the best possible outcome. Three doctors recommended against the tonsillectomy, one stating I already had enough removed - referring to the turbinectomy, another stating that no doctor would do the tonsillectomy without 4 confirmed cases of strep throat in a year, and a third highlighting the value of the tonsils with respect to providing antibodies and lymphocytes. So I basically went to a local ENT (after doing some research on him) and said my physician from out of town would be glad to do the tonsillectomy on me, which he honestly would, but I do not want to be away from family for that long and I would prefer to be closer to the doctor who did the surgery in case of complications such as bleeding. He gladly agreed to do it, thinking it was a reasonable option for me. My tonsils were diseased, not that enlarged, but they were indeed causing symptoms.

I also am going to a new primary care provider who recently had her tonsils removed. Before the procedure, she supported me and though I was definitely a good candidate for it. She noted how, after the tonsils are removed, the other lymph glands work more effectively to remove mucus from the throat. And she was definitely right.

If you are thinking of a tonsillectomy for chronic infections as an adult, don't hesitate to do it. It might be intense pain for a short time, but the end result is totally worth it.

Long-term nasal saline irrigation linked to increased risk of infections: Wrong conclusion?

An ENS sufferer sent me an e-mail that discussed a study suggesting too much irrigation can lead to more infections. I have been using irrigation, nose and throat, every day for several years. I wrote the following ezine article in 2007:
http://ezinearticles.com/?Why-You-Must-Do-Pulsatile-Nasal-Irrigation-Even-If-Youre-Healthy&id=751410. I still believe it to be true today. I believe that the authors of the study came to the wrong conclusion. Keep reading to see why. Fact is hundreds of research articles document the benefits of daily nasal irrigation, but only one suggests to the contrary.

The following links discuss a research study that suggests long-term use of nasal irrigation can lead to more infections, not less:

http://www.medscape.com/viewarticle/712146
http://www.medpagetoday.com/MeetingCoverage/ACAAI/16870

One doctor's perspective on this study:
http://www.medhelp.org/user_journals/show/138531

This doctor wrote: My feeling is that if you feel better and you don't get as many infections, keep doing it. After a few weeks or months, you can experiment by stopping the irrigation and see what happens. I agree with this doctor's statement. Furthermore, this is just an abstract, it only addresses acute sinusitis, and ringer's lactate solution has been found to be more effective than plain saline for increasing mucociliary clearance when doing rinses; it's too bad the study didn't use Ringer's lactate.

Here are some questions I thought up in light of this study (that I'll try to answer):

Question: Is cleanliness of the irrigation apparatus part of the reason for increased infections over long-term use?

Answer: I happen to believe this is really the key issue. It's important to clean the irrigator regularly, no matter which one you use. With the neti pot or neilmed (or a bulb syringe), you get backwash, which increases the potential for bad bacteria to multiply very quickly. You don't get backwash with the HydroPulse, for example. Devices that don't prevent backflow will become contaminated very quickly, so the patient reinfects themselves. Bottom line: by using an unclean irrigator, you reinfect yourself. Clean it regularly and don't use a device that allows backflow. Use the HydroPulse.

Question: Is there a potential for mild dryness and a rebound effect with irrigating too frequently?

Answer: Breathe-ease XL irrigation solution is in fact hydrating and, according to Dr. Grossan, it is the exact same solution as used in IV in a hospital for hydration. So I wouldn't worry about mild drying and a potential rebound effect (as you get from Afrin), if you use Breathe-ease isotonically, and twice per day. I have been using Breathe-ease XL everyday and doctors have noted my nose is somewhat moist, considering it's an empty nose. If you use plain salt water, on the other hand, then you might get mild drying and a rebound effect over long-term use. Just go for Breathe-ease XL and avoid using products that have additivites or preservatives, such as benzalkonium chloride.

Question: By irrigating too regularly, such as daily, can you potentially reduce the immune products - enzymes, beneficial bacteria, antibodies - in the nasal mucus?

Answer: From what I am told by some medical professionals, the body regenerates the defense products regularly, so you would need to irrigate hourly or more to reduce the immune products in the mucus, ultimately lowering the immune system. My immune system has improved over the years and I use an irrigator daily.

Question: What would be an effective strategy to keep infections at bay when irrigating? I piqued Dr. Grossan's brain on this one and below are his thoughts:

Xylitol is available on the net for less than 5 dollars a pound. The xylitol in Breathe ease XL is less than 1% so it isn’t so much to get rid of bugs, it is for restoring the cilia. Bugs get serious indigestion with Xylitol . So if you start with a 1% solution you can gradually increase it to 5% to see how that feels. You still need one tsp of salt to make saline or the breathe.ease XL

Again 2 tsp to 500 cc of saline is 1%
4 tsp to 500 cc of saline is 2%
And up to 10 tsp of Xylitol gets to 5%

Below are two articles written by Dr. Grossan that I thought I would share:

Nasal Irrigation:
http://www.ehow.com/how_5694507_use-nasal-irrigation-sinus-problems.html?shared=true

Throat irrigation:
http://www.ehow.com/how_5800211_wash-away-tonsoliths-halitosis.html?shared=true

Message for Dr. Phil

Just thought I would share the letter I sent to Dr. Phil. Thanks for posting on this, jdog. I hope others will post a reply to Dr. Phil as well....the more, the better chance we will be heard. I have sent many emails to Oprah and Dr. Oz in the past, but hope springs eternal. I probably didn't personalize my letter that much as I tried to briefly explain ENS, but I encourage you to share gory details of your suffering, if you so desire.....

Here’s my story of how an incorrect diagnosis (of rhinitis) led to an unnecessary and highly damaging nose surgery. I had a highly aggressive nasal surgery performed on me in 1997 that has led to a serious and troubling condition called empty nose syndrome – or ENS. Because the turbinates are largely removed or rendered dysfunctional as a result of the surgery, the nose is unable to heat, humidify, and filter air, or provide nasal airflow resistance to the lungs. This condition consequently leads to many problems including nasal dryness, breathing difficulties, chronic throat discomfort, recurrent (and sometimes serious) infections, and it is associated with high rates of depression – even suicide. Because it is caused by surgery, very few physicians strive to treat it.

In addition to patients, some expert doctors that you could consider interviewing include: ENT specialists Dr. Houser of Cleveland, Ohio, Dr. Grossan of Los Angeles, California, Dr. Eugene Kern and Dr. Oren Friedman of Mayo Clinic, Rochester, MN; and Dr. Wellington Tichenor of New York City.

Thank you so very much for your consideration of our serious but little known and poorly understood iatrogenic condition. You could do a ton of good by making the public aware of our plight.

Reply on article - "who needs a doctor these days when we have the Internet?" by Gary Brown

Given my indebtedness to the Internet in helping me to find assistance for my condition of empty nose syndrome, as well as a diagnosis, I offered a reply to columnist Gary Brown, of Canton, Ohio, who wrote the following article, entitled, "Who needs a doctor these days when we have the Internet?"

You can read this article at:
http://www.cantonrep.com/opinion/columnists/x1487806223/Gary-Brown-Who-needs-a-doctor-these-days-when-we-have-the-Internet

Below is my reply:

Dear Mr. Brown:

Thank you for your column, "who needs a doctor these days when we have the Internet?" I sort of appreciated the humor contained in it and I am glad your hand is feeling better - I was sooo worried about your poor hand ;) However, while the Internet can certainly be a source of worry, as you might wrongly 'discover' you have this or that self-diagnosis, I find it to be an extremely valuable source of health information. Granted, I read everything with a critical mind, but I research medical articles on pubmed.gov (and can think for myself on them), learn more about different health problems, learn treatment strategies for coping with health problems, and natural remedies (free of side effects caused by prescription drugs). The best part is I don't need to wait an hour or two to talk to a "hurried" know-it-all doctor. I can then utilize my newfound knowledge and maybe seek 'expert' advice from doctors, who are woefully ignorant on nutrition and reluctant to believe anything that can't be replicated in a double-blind study, so we can work together for the best possible outcome. Pardon the sarcasm, as I genuinely believe (and have found some) doctors who can play an important role in people's health; it's just that many overpaid, overworked, proud doctors don't or can't and ultimately, as patients, we need to be our own doctors and take control of our health.

Frankly, I would not even know I had "empty nose syndrome," which was later confirmed by a doctor 6 1/2 years after the onset of symptoms, unless I learned about it on the web because doctors are slow to diagnose it, let alone acknowledge it as a serious problem. (It's clearly a real problem with medical journal articles on it). Frankly, the Internet is a communication tool that threatens dictatorships and I think we should be thankful for it, if we have the IQ to filter the wheat from the chaff. I know my health is much better off because of it.

So I think you're right, on some level: who needs a doctor these days when we have the Internet!

Sincerely,

Christopher Martin


I shared my reply with an ENS sufferer and friend, and he replied as follows:

Hey Chris,
Your response is very good. I think Gary Brown's point of view was one of trivial medical issues that many get all excited about for no reason. We, on the other hand, found out our major medical issue via the internet after going to countless doctors who were unwilling or unsure of a diagnosis.

Mercury Dental Fillings

The use of mercury in dental fillings is a type of "killing us softly." Most of us know people who have had so-called "silver amalgams" and many appear healthy. Because people have fillings and because these people do not have clearcut signs of serious adverse health affects as a direct result of such fillings, people assume they are totally safe. Wrong. The American Dental Association, after all, makes it claim that fillings are safe because they have been placed in the mouths of so many people for so many years. They even threaten dentists who suggest removal of mercury fillings for health reasons as unethical and at risk of having their license revoked. Too many dentists, in turn, are proponents of mercury fillings because they are cheap and durable, which ultimately adds to their business. I brought the concern of mercury toxicity up with one hygienist who remarked, if these fillings are toxic, then I will be the first to have them removed. Of course, I highly doubt she was tested for heavy metal toxicity, so how would she otherwise know if she was toxic from heavy metals? In any case, I did what I believed was correct for my health. I had a dentist remove a toxic substance and replaced it with a less toxic substance. That's all.

Mercury, which comprises 50% of the metal fillings, is highly toxic. It is my opinion that the mercury in fillings should not be placed in our mouths. Period. There are better alternatives, such as resin composites and porcelain. I am willing to pay extra for these products because I care about my health. In fact, I just had all 7 fillings replaced with resin composites in the past 2 months, while also following a heavy metal detoxification protocol to decrease the toxic load of the mercury in my body caused by these fillings, which have been in my teeth for the past 20 years. I use "HMD," which stands for heavy metal detox. It is a bit expensive, but worth it in my opinion. (HMD has been tested through a 3-year double blind study to reduce the load of toxic metals. Of course, the dentists and medical professionals like to suggest that any 'natural' product that has not undergone rigorous testing can be considered quackery, while medicine put on the shelves often have side effects, needing the drugs to be recalled years later for serious adverse side affects. Don't get me wrong, companies of supplements often push their products out of greed, just like Big Pharma. But just because a product has not been shown to be highly effective in highly controlled, double-blind research studies is not a reason to dismiss it....if only the medical authorities were educated on nutrition, they would be in such a better position to help patients with chronic health ailments!)....Okay, I am going on a tangent here and HMD has been proven to be effective....

Mercury in amalgam fillings results in the release of 17 micrograms per day per filling. That's quite a bit if the average person has 8 fillings. Having just 4 fillings leads to a higher level of mercury in our bodies per day than is recommended as a safe and acceptable level by the World Health Organization. There are significant neurological problems associated with mercury, and it is highly absorbable into the bloodstream and all body tissues. In response to such concerns, Germany, Austria, Sweden and Norway have banned and/or significantly curtailed the use of mercury dental amalgams. Good for them. California has issued statements suggesting possibile toxicity from mercury to pregnant women and Canada, from what I recall, recommends no more than 4 mercury fillings for adults.

Bottom line: Go to an environmental or biological dentist who practices mercury-free dentistry. If you have such fillings, get them removed in a safe manner following a careful protocol. I personally used activated charcoal before and after the restorations, as well as a vitamin C flush, after they were done, in accordance with the recommendations of one dentist. I cannot state that the removal of such fillings have had a profound impact on my health, although I have noticed some improvement with respect to nasal inflammation, and I am only less than one week post-restorations. But I am well aware of concerns with mercury amalgams. It is just good sense to put only biocompatible materials in one's mouth. Doing anything else, despite the financial feasibility (or financial benefit to a dentist through increased business), can be potentially harmful.

New ENS website

An empty nose syndrome sufferer is writing a website devoted to raising awareness about empty nose syndrome: http://emptynosesyndromesite.com. I encourage all who browse this blog to visit it. It has useful treatment tips and quite a fascinating story. Like many of us who suffer from ENS, the sufferer has been through terrible experiences in striving to treat her health as well as in dealing with the mainstream medical community that has failed her. I hope she is able to find some real relief for her issues, and I wish her the best in working with me to promote awareness for empty nose syndrome. Her efforts, I am sure, will not only raise awareness, but also make an impact among ear, nose and throat specialists. The more stories out there, the more we will be taken seriously.

Question from ENS-Type Sufferer

Question: I have ens-Type. I had coblation of the inferior turbinates. The coblator was passed 3 timed and my turbinates were outfractured.
I am outraged my surgeon has crippled me so. My question to you concerns my reading that turbinate tissue can regrow. When will this regrowth begin? Can I go back to normal? What percentage of sufferers of ens-type through turbinate coblation experience total regrowth?

Its been a year since my surgery. Please help. Thanks

Answer: If your turbinates have not regrown after a year post-surgery, then I am doubtful they will regrow. You definitely can enjoy some improvement to your health, however, but this will take some serious dedication to your nasal health as well as learning from others with identical issues. I don't know the answer to what percentage of ENS-Type sufferers experience total regrowth - it likely depends on the amount of mucosal damage and amount of resected tissue, with more tissue removed or more mucosal damage, then less promising is the prognosis. Some patients with ENS-Type have reported much improvement from implanted Alloderm tissue. Get opinion from Dr. Houser and go from there.

Acidic Saliva, Dry Mouth & Throat Infections

In a perfect world, I would be able to go to a doctor, the doctor would spend much time with me, do a careful examination, offer useful suggestions, and make an appropriate diagnosis. The doctor would be either able to effectively treat my condition or refer me to a specialist who could. I wish. The current healthcare system offers the exact opposite solution for patients with chronic health ailments, such as myself. Modern health care consists of a hurried environment where the doctor gets paid more to see more patients, the patient's questions or concerns are not valued, and the doctor is trained to think in accordance with the major medical societies and not outside the box (e.g., not see the value or have training in nutrition or supplements, not question the medical journals, which are at the mercy of Big Pharma).

Is it any wonder, then, that it took me 6 years post-surgery and an Internet search (when only 2 or 3 sites mentioned empty nose syndrome) to discover I had a little-known condition called empty nose syndrome? Or that it took 12 years of intense suffering, pressure around my ears, to discover that I had a tempromandibular joint disorder, even after I asked doctors repeatedly to examine my ears? In my case, and I am sure with many patients who may be reading this blog, you have to be your own doctor. Do your homework and don't rely on doctors for good health. You are your best advocate when it comes to your health- no one else is looking out for you.

Now my big question I am presently grappling with is "how do I get to the root of my throat infections?" I get about 6-7 per year, and the infections just linger in my throat until I go on an antibiotic. I would actually say I am free of sinusitis now and am just trying to eradicate infections that linger in my throat - well after a cold is done. There are so many avenues I could pursue to treat infections and build immune health, so my ultimate goal is to get to the root of the problem and attempt surgery (such as a tonsillectomy) only if the preventative treatments fail. Recently, my primary care provider noted I always have a dry mouth and I think he hit the nail on the head. He was not the first doctor to note I had an "extremely dry oral mucosa." A third doctor also noted I had mildly erythmatous throat - mildly inflamed - with thick, sticky mucus, which is the way my throat is all the time. So I think the line of attack is, in my situation, good oral hygiene. These issues are closely linked to increase in cavities, so that should be a second benefit, with (I am hoping) the primary benefit being a decrease in throat infections.

The problem is I have acidic saliva (ph of 5.75-6.25 most of the time), but very alkaline urine. A main function of saliva is to neutralize acids in the mouth after eating. Saliva also eradicates bad bacteria, mold, viruses, and fungi in the mouth, so there is an increased risk of candida and infections among people who have dry mouth. What this suggests to me is that my body has weak digestive enzymes and poor oral health, but excellent ability to excrete acids and assimilate nutrients. Based on what I have read, there can be many causes to acidic saliva, including the possibility of dry mouth as a causative factor. And dry mouth has a number of causes as well. (Of course, my mouth does have more saliva than people with xerostomia - dry mouth, so doctors are reluctant to put me on saliva stimulating medication, such as pilocarpine, but maybe that's just as well because most medications have side effects). Did you know I am on NO medications? That's right, I just take some supplements as of this writing.

So here are some thoughts on causes of acidic saliva:
(Reference: http://www.ehow.com/facts_5660143_causes-acidic-saliva_.html)

1. Dry mouth. Sjogren's syndrome, which includes a dry mouth and dry eyes, can lead to acidic saliva. Insufficient saliva is produced, so the mouth is unable to dilute acids. This may apply to me on some mild level, although I have not undergone testing from a rheumatologist (e.g., salivary gland biopsy, salivary flow test, eye test).

2. Radiation. Cancer patients who have often undergone chemotherapy have damaged salivary glands (from the radiation) that leads to acidic saliva. This does not seem to apply to me personally, although I have undergone multiple CT scans of my sinuses in my life.

3. Smoking. Smoking decreases saliva production. This does not apply to me, as I don't smoke.

4. Acidic foods. Spicy, salty, sweet foods - oh, I do admit that I am a big fan of citrus fruits and hot, spicy foods, so this could definitely be a culprit in my case.

5. Sugary foods. Sugar is very difficult to eliminate entirely, but reducing the load - by primarily eating sugar in fruits, called fructose - is one way I have reduced my sugar intake. As you may be aware, sugar immediately paralyzes the immune system. In the mouth, bacteria thrive on sugar and a byproduct of that is acidic saliva. In my own experiences, diet is critical for immune health, with removal of sugar and yeast as the two major culprits to poor immune health. I was reading somewhere that acidic saliva with mercury amalgam fillings can lower the immune system. (I recently had my 7 amalgam fillings replaced with resin composites, while simultaneously undergoing a heavy metal detox - we'll see if that helps!)

As you read above, dry mouth may be one of the causes of acidic saliva. There is a good discussion on why saliva is so important for cleaning the mouth and preventing infections at: http://www.breezecare.com/infobb/drymouth.html. I also appreciated Dr. Mercola's discussion of dry mouth at: http://articles.mercola.com/sites/articles/archive/2010/01/12/How-to-Lick-Bad-Breath-and-Dry-Mouth.aspx"

In any case, reasons for dry mouth are similar to reasons for acidic saliva, as follows:

1. Medications. More than 400 medications can cause dry mouth. I personally have been on antihistamines and decongestants long-term in the past (for about one year), which I surmise could be a contributing factor at present, even though I was on these medications about 9 years ago. I am only on supplements, and I suppose it is possible that the binding elements of these supplements cause dry mouth.

2. Stress. I definitely notice a close relationship between stress and my degree of dry mouth.

3. Nerve damage or injury to the salivary glands from surgery.

3. Sjogren's and other medical conditions.

4. Dehydration. Not drinking enough. I drink a lot each day, about 10-12 8-ounce glasses of water per day, so this is not an issue for me. If anything, I am usually thirsty. I also don't talk a lot, so this doesn't cause it either for me.

5. Smoking or chewing tobacco.

6. Mouth breathing. I am sure I do this, given my nasal anatomy, but I doubt this is the main reason I have dry mouth.

To be perfectly frank, this issue of unhealthy saliva, dry mouth, and acidic saliva sort of remind me of the type of battle I face with TMJ. Think about it: both seem to have a neuromuscular component and are related to stress, both can make life uncomfortable, and both can primarily be managed, not cured. I have done a pretty good job of controlling my TMJ symptoms, now it's onto good oral health. Keep in mind I have not had any additional cavities in the past 10 years, so I must be doing something right.

Here are some treatments for dry mouth:

-Using a dry mouth mouthwash & toothpaste, among other dry mouth products (gels, gum, moisturizing sprays, lozenges).
-Prescription medication such as pilocarpine - "salagen."
-Using an over-the-counter artificial saliva substitute.
-Sucking on sugar-free candy.
-Chewing sugar-free gum, with xylitol.
-Sipping water throughout the day.
-Protecting your teeth by brushing regularly.
-Breathing through your nose instead of your mouth to the extent possible.
-Using a room vaporizer or humidifier in the bedroom.

Here is my personal course of action for attacking the issues of acidic saliva and dry mouth:

1. I definitely need to attempt to aggressively treat dry mouth and improve the saliva PH, which I can measure in the comfort of my home. I think the biotene mouthwash & biotene toothpaste are the two best products toward this end. I also hope to try the prescription medication eventually, if a doctor will test me for a dry mouth syndrome and agree to try it with me. Okay, perhaps I should seek medical opinion from a rheumatologist.

2. As I admitted earlier, I am a sucker for spicy, salty and sweet foods, as well as acidic fruits. I need to cut back on these. Hopefully that should help with both the PH of my saliva, as well as my dry mouth.

3. Decrease stress. This is always a challenge for me, but possible. My mouth (and perhaps throat infections would appreciate it!)

Reader replies on balloon sinuplasty

Nice post!
Balloon sinuplasty seems to be getting a ton of traction lately. If nothing else I am glad that people are becoming aware of other options. It used to be that sinus surgery was the only way and that's a pretty invasive procedure w/ a less than stellar success rate.
Thanks again for posting. I will now go and check out your book!

My reply: Thanks for your thoughts. I agree it is nice to have less invasive options. I would just add this one comment: I think treating the sinuses to prevent inflammation post-sinus surgery would help ensure its effectiveness; in the case of an antrostomy, it would make it a permanent success as the opening would remain there to prevent recirculation. Of course, it's important to do all you can preventatively prior to undergoing surgery in the first place. Thanks again for your thoughts!

Balloon Sinuplasty

A reader e-mailed me the following comment:

"any thoughts on balloon sinuplasty? effective? covered by healthcare typically?"

This is a procedure indicated for sinusitis patients who have recirculation of mucus in the maxillary sinuses becaues of blocked ostia. I'm not much of an expert on balloon sinuplasty so I'd refer the reader to the following site: http://www.balloonsinuplasty.com I recall my brother-in-law, who is a family doctor, sharing information with me on this procedure a while back. Here's how I understand it: it works like an angioplasty in that a tube is inserted into the ostia and then opened when there (to open the sinuses). My thoughts are that, if balloon sinuplasty is indicated for your particular condition, go for it. It's less invasive and appears safer than an antrostomy with fewer post-surgery complications. If you simply need a little opening of the ostia, and the ostia are not blocked by scar tissue or tissue that needs to be removed, then I would surmise it would be effective. In my case, tissue had to be removed surgically so I was not a candidate for ballon sinuplasty. This has fixed recirculation for me and lessened my risk of sinusitis in the right maxillary sinus, in particular. Of course, like with an antrostomy, I surmise you do need to be sure to keep inflammation at a minimum post-surgery, so the ostia do not become blocked again. As to whether it is covered by insurance, I am really not sure. You'd have to check that out with your insurance company. Good luck!

That would be fantastic....

Hello Christopher, congratulations! I am in Europe and currently writing a free book about my experiences from suffering chronic sinusitis. I would be very happy to get your book. I would also like to exchange links. You have a special invitation to comment on my chapters that I am putting online. Kind regards, MarcusMarcus Brinkmann

My reply: That's fantastic. I'd be glad to review your book and offer comments. Please go ahead and put a link to my site & I'll do the same once I know your website. To readers of this blog, please read the blog post below on primary immunodeficiency and ENS.....it is lengthy, informative, and hopefully will pique your interest...

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 (https://www.alcat.com/index.php) 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: http://www.triggerpointbook.com/

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 (http://www.aslrx.com/get-started-physician.shtml). 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 (http://www.naturalpathsilverwings.com/products_hmd.html) 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://www.naturodoc.com/library/cancer/epicor.htm) 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 (http://altmedicine.about.com/cs/dietarytherapy/a/LiverFlush.htm)

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

• Colostrum.
• Medicinal mushrooms. (http://www.ahccresearch.com/)
• Rice Bran in "Peak Immune Support 4" (http://www.peakimmune4.com/)
• Astragalus.
• Echinacea
• Goldenseal
• Biotic silver (an advanced form of colloidal silver) (http://www.candidayeastanswers.com/).
• Olive Leaf Extract.
• Oregano Oil.
• Garlic.
• Probiotics. I take a 66 billion capsule from Swanson (http://www.swansonvitamins.com/SWL008/ItemDetail)

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,

Chris