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Avatar universal

Antibiotics for asthma: here I go!

This is my first post about the journey I've just started with antibiotics in the hope of eradicating asthmatic symptoms. Google "asthmastory" to find out all about this.

My doctor has agreed to start me on clarythromycin based on discussion with him about research and information, icluding an article Mycoplasma pneumoniae and Chlamydia pneumoniae in Asthma: Effect of Clarithromycin, published in the journal Chest.

I started the treatment two weeks ago. I have not had a dramatic improvement at this stage, but I'm not expecting to either. All of the information indicates it can take up to 12 weeks or even longer for the treatment to be effective, if the bacteria is the cause.

Chlamydia pneumoniae typically causes a respiratory infection that is at first acute, and then can cause troubles in the airways. I have had a chronic cought (viscous yellow phlegm) for a year. During the same time, I developed "late onset" asthma.

One of the things that can happen if the bacteria die is a flu-like reaction called a Herxheimer reaction, which results from endotoxins released as the bacteria die off. I got this reaction on days three and into day four. It was pretty mild, just felt like I was coming down with a flu but nothing progressed. I was glad to have this reaction because it was tangible evidence something might be going on.

My cough has now pretty much gone. If I cough up anything, it is clear rather than yellow/green. This is the first time in a year I have not coughed up yellow-green phlegm (daily).

As I understand it, if the bacteria are in the airways, as they die off they can also cause more inflammation in the short-term, leading to a temporary worsening of symptoms. I may be experiencing this at the moment. I have had a couple of unusually bad days, with pronounced difficulties breathing at times so that I've had more asthma meds than usual.

Quickly after I began the antibiotics, my sinuses "cleared". The bacteria can live in the sinuses; in fact that's where they were first found. I had not really expected this because my sinuses were not too bad, but again, I'm glad because it is tangible evidence that the antibiotics are killing off bacteria.

The antibiotic treatment is not causing me any problems, fortunately, although I will have my liver function monitored as I stay on the treatment for a few weeks. It has been suggested that if there's no response after 12 weeks, further treatment is probably not worthwhile. All the same, I know some people have taken longer.

I remain hopeful that I will see an improvement in this timeframe. At the moment, there seems to be no real downside to the treatment. I am really glad that there have been several signs that bacteria are indeed being killed.

If you're not aware, many people claim that their asthma has been entirely eradicated by this treatment. It may be relevant to around 50% of people with asthmatic symptoms. Obviously, anyone who wants to pursue it needs to do their own homework. Believe me, unless you have an unusually informed doctor, s/he won't know about it. However, my doctor was happy to go with the treatment based largely on the publication mentioned above.

Let me know if you're interested in how I progress. I will post more on my progress if there is sufficient interest.

Take care all.
29 Responses
209987 tn?1451935465
I am so VERY VERY interested to know if it works for you.
My hubby had a severe attack two months ago and they told us that he wasn't going to make it...he survived...after they pumped about a litre or more of thick yellow/green mucus out of his lungs...dosed him up on potent antibiotics, fed him through his chest, kept him intubabted...you get the picture. They are still not sure what it is, so they labelled him with COPD. They think it's possibly asthma due to allergies but...they just don't know.
All they know is that after they sucked the junk out of his lungs he woke up, could breathe on his own, and he felt like a million bucks.

He's started coughing and using his inhaler again for the past 2 weeks now, and we are both afraid that it's going to get back to that bad stage again.

It was terrifying to watch him "die" on our driveway, and then have to wait 23 minutes for help.

I sincerely hope this works for you, and PLEASE keep me updated!!!

Avatar universal
That's awful, but it's great your hubby made it through. I'll definitely keep you updated.

You might be interested to watch a Fox News news segment with Dr. Hahn and Jim Quinlan, who put up the asthmastory site. Feel free to send me a message if you can't find it. Jim nearly died of a severe "asthma" attack but ended up eradicating his asthma. It's quite a story.

Thank you kindly, I hope it works for me also. I will keep you posted. Keep in mind that all indications are that it takes a long course of antibiotics to kill these bacteria. There's generally reluctance to put people on these but given the circumstances, you might find it easier than some.

I'll keep you posted.
144586 tn?1284666164
There are good arguments not to encourage asthmatics to take antibiotics to cure their asthma, although it is true that long-standing infections can trigger attacks. In the first place there are a limited number of antibiotics available and new strains of bacteria are developing every day. Generalized use of antibiotics is a bad idea for the human race. Secondarily these long-term lung infections are there because they have been encapsulated in biofilms, insulated from the action of antibiotics. Sinus infections are notoriously difficult to destroy. Saline helps, but surgical intervention is often the only answer.

One must also ask the question as to what percentage of asthmatic patients suffer from a bacterial infection? What part of the universe of patients have flare-ups atributable to bacterial infection?

I would not disagree if your physician prescribes a specific antibiotic for a particular patient, but Fox news oversimplifies the issue, and in the long run, unnecessary use of antibiotics causes development of antibiotic resistant organisms, and will cause deaths among patients whose infections can no longer be treated.

Providing antibiotics to every patient with asthma is not good medicine.
Avatar universal
That is a classic strawman argument. Who said anything about precscribing antibiogics to every patient with asthma?

In fact, only specific antibiotics are helpful, and if you read what Hann and others say, they are usful only to a percentage of people.

It is sad to see ignorance being spread about this. There are bacteria that can definitively cause asthmatic symptoms M.Pneunomniae and C.Pneumoniae. They are treatable. Not everyone who has asthm has these bacteria, but epedemiological studies show that a lot of people do indeed have these bacteria.

Avatar universal
hi, here is a thought for u; while antibiotics kill bad bacteria you also have good bacteria in your immune system in your gut and the antibiotics kill those also; so to counter this and to boost the immune system= Pro-biotics can be bought at vitamin store and the more antibiotics u take the more pro-biotics u need MUST SEPARATE TIME OF DAY BY 3 HR
otherwise they just cancel each other out. and since your immune system should have TRILLIONS u need to buy culture counts in the tens to hundred billion

this also goes for taking antibiotics for whatever reason
an added benefit of pro-biotics is to rid the body of G.I. problems like gas, bloating, flatulence, diarrhea, constipation etc

and last here is ONE MAN'S solution which is really out there;

http://www.youtube.com/watch?v=kUARfMOMqCw

good luck
Avatar universal

That's really good of you. I have several nurses in my family/extended family, and I've had good advice here. I'm on probiotics that were recommended to my mother (nurse) when she had bowel problems. I take them three or four hours apart from the antibiotics. That was my single greatest concern about taking antibiotics longer-term.

To report where I'm at, it is clear my chronic cough has gone. The situation with asthmatic symptoms is mixed. I feel my chest is much clearer, and there are times when breathing feels unusually good. On the other hand, there are times when breathing is togher than ever. This is what one person explained happens. I was prepared for some worsening of symptoms before any improvement, but also times when breathing would be better. The reason things can get worse, as I understand it, is that part of the problem caused by these bacteria is inflammation caused by chronic endotoxins. If they die, apparently there can be more endotoxins, and inflammation can become worse.

I'm just over three weeks into using clarythromycin. I need to get a liver function test now to check it. I really hope my doctor will extend the empirical trial to at least about two months, because from everything I've read, less than this is fairly likely to be a waste of time. I would also like to add metronizadole in a while. If I get another Herxheimer reaction (see above), it would suggest the bacteria are still there in the so-called "cryptic" form, which can cause re-infection. If I don't get a reaction, and my symptoms have improved, I think I'll leave it there. Anyway, one step at a time.
Avatar universal
Hi,

Good luck with your treatment.  I was also treated for Neutrophillic Asthma (the name for asthma cause by chronic mycoplasma or clamydia infection).  My treatment was 2 full weeks (maybe longer) of high dose clarythromycin.  I felt great for about two weeks then started down again.  A daily maintenace dose of clarythromycin was discussed.  This was one component of my complex asthma story, but I had another under liing disease that had to be dealt with.

I would urge you to take a probiotic to prevent depleting the good, digestive bacteria from your system which will result in digestive trouble which may include severe heart burn or other GERD symptoms. Clarythromycin is a very strong antibiotic and known for causing digestive issues.

For me the real answer was Aspirin Exacerbated Respiratory disease.  Treatment for that is 100% effective (if you have AERD).  Treatment and daily therapy has been totally life changing.

Praying that you antibiotic therapy is the answer for you.

God bless.
Avatar universal
After reading the thread, I want to add a few comments.

Caregiver22 - You pose a few good objections.  However, there are several ways doctors don't over prescribe antibiotics for this purpose.  Some are presented by 987931.  My doctor prescribed the treated based on a history of repeated mycoplasma infections - at least 1 a year for 13 years.  Mycoplasma pumonae infection can be confirmed by a blood test.  If  a patient is very concerned about the over use of antibiotics (and I do agree that it is an issue to consider), they should request a bronchoscopy for a firm diagnosis before starting therapy.  A sputum sample may also give a firm diagnosis.  It may be less accurate (a positive test is positive, but there could be more false negatives) as the quality of the sample is not as good.  This is less invasive and has zero risk to the patient.  

These infections (as well as a host of other micro-organism infections) are also common in people with bronchiecstasis.  This can be diagnosed by bronchoscopy or by a chest-CT.  

When testing is not done, this treatment is typically only used on people with a history of repeated asthma flares due to infections.  Usually it is a very short cycle of treatment, feeling reasonably well for a very short time, and then cycling down into active infection again.  

I am glad to hear that 987931 did their homework and is taking a probiotic.

I wish 987931 luck with this treatment.  If it doesn't have the desired affect, I would recommend being tested for AERD (Aspirin Exacerbated Respiratory Disease), bronchiecstasis with any of its many micro-organism culprets, other bacterial infections (triggered by bird exposure, cats...), and even a fungal or mold infection.

If you are someone who suffers from chronic, severe, persistant asthma, DO NOT give up.  There are many options to to pursue.  Sometimes it is a combination of issues to treat and resolve.   As someone who has a life (two minor infections since aspirn treatment) after three years of battling severe asthma with less and less of a social life, there is hope and healing.

Hang in there.

God bless.
Avatar universal
Thanks for your comments, as always.

You say you would recommend testing fo AERD. I was taking ibuprofen for some time, but now have it very occasionally. I have had an allergic reaction to aspirin itself, and have not taken it for decades. Would you still recommend testing for it?

I will indeed keep bronchiecstasis in mind if the treatment is unsuccessful and, at this point, that would mean if the chronic cough with green/yellow phlegm returned and asthmatic symptoms kept going. I'll ask for a bronchoscopy and/or chest CT.

I totally agree about mycoplasma and chlamyidia pneumoniae testing. The real danger is false negative, or even elevated titres that are considered unimportant when they are important.

I kind of hope my infection is m pneumoniaie because I'm on the right treatment for it as well, as long as the bacteria don't have resistance. M pn doesn't have different forms/phases that c pn has, which make c pn so difficult to eradicate.

You said:

"For me the real answer was Aspirin Exacerbated Respiratory disease.  Treatment for that is 100% effective (if you have AERD).  Treatment and daily therapy has been totally life changing."

That is excellent news! I was taking ibuprofen for a period of about 18 months before developing, or at least seeing worsening of, breathing difficulties. I virtually stopped ibuprofen, although I do have one or two tablets now and again when I experience bad lower back pain.

I couldn't agree more that there are options to pursue. Well said.





Avatar universal
With your history of reactions to aspirin and ibuprofin you are a very good candidate for AERD.  AERD is under diagnosed because many patient don't attribute that attacks to the medication.  A reaction can start as much as 3 hours after taking the medication.  At that point, patients don't link the two together.  

I would strongly recommend that you see a qualified allergist for testing and possible treatment for AERD even if you do think the clarythromycin is helping.  It sounds to me like you could be in a very similar situation to what I experienced.  Testing for AERD requires the patient to be given 1/4 a baby aspirin and watched for 3 hours.  If there are ANY symptoms the test is positive.  Many times the doctor will procede directly into treatment (aspirin desensitization) and give the patient 1/2 a baby aspirin, graudually increasing the dose and treating reactions.  Symptoms are treated as they occur - sinus sprays like Afrin for sinus congestion, migraine medication for headache, and breathing treatments for asthmatic reactions.  The treatment takes a full day, and in rare cases two or three consecutive days to complete.  After treatment, the patient must take aspirin everyday or they will be sensitive to it again.  Some ariticles on the subject say that the treatment should be done in a hospital.  Some allergists are well trained and have well trained staffs and can handle doing it in their offices.  If you know your doctor well, you may opt for treatment in their office.  For me, I trusted their staff more than I would trust a hospital staff.

I won't candy coat it - the treatment isn't fun.  It does sound a lot worse than it is though.  If that is the problem, it is well worth it.  For me, symptoms stopped about 4 - 5 hours into the process.  

You obviously like to do good research.  Google search aspirin allergy, Aspirin Exacerbated Respiratory Disease, Aspirin Induced Asthma, and Sampter's Triad.  The most common modern name for the disease is AERD.  There are some excellent articles out there.  Some doctors think that the disease only occurs as a triad - chronic sinusitis, recurring nasal polyps, and chronic, sever asthma because Sampter first linked the three symptoms to aspirin in the 1880's.  This is not the case.  I have never had a sinus polyp, but the others do describe me very well.  My GP was thrown by that until well after treatment.  Good thing I have a great allergist.

Good luck and God bless.
Avatar universal
Thanks yet again for the valuable information. I've done a bit of research on AERD since you mentioned it. Yes, I do like research--I'm an Associate Professor, but not in medicine (!). You say you'd recommend I see a qualified allergist for testing for AERD even if you think the antibiotic treatment is helping. I really appreciate your view. To me, also, it's not a matter of even if. One of the most prominent "logical fallacies" is the fallacy of a single cause (I know I'm prone to making it, and may well have done so here at some point). Basically, a lot of things, particularly in biology, have joint/multiple causes. I seem to be a very good candidate for Mpn or Cpn infection, as well as AERD. It's possible, for example, that I've had the infection for a long time and ibuprofen usage jointly with an infection led to breathing difficulties.

So I have started to find out about AERD and I will find out more, thanks very much. One thing I haven't been able to ascertain very easily is how common it is for those affected to have symptoms that persist despite avoidance of NSAIDs. I rarely have ibuprofen, and given what you've told me, the mere possibility is enough that I will totally avoid NSAIDs from now. There is another factor that makes the likelihood even stronger that AERD is a (part) cause of my breathing difficulties. I do have a nasal polyp, which showed up on an MRI several years ago. Also, I experienced quite a bad reaction to a stronger NSAID that I had with back pain. It was strong enough that I discontinued its use within about 72 hours. I just felt off.

Staying off NSAIDs is not really an issue now because I've found a fantastic physiotherapist (after years of duds!). I do still have paracetamol, and although I know it's not a NSAID, I get the feeling from what I've seen that there could still be a question mark over it.

It would make a lot of sense that I either had an infection and NSAIDs exacerbated it or I was using NSAIDs, and couldn't tolerate an infection. Of course, it could be just an infection, just NSAIDs, or something entirely different. I hope it's not the latter because there are strong indications it's one or the other. My breathing difficulties that were bad enough to start asthma medications started immediately after I had a painful, hacking cough last year. This is fairly classic with chlamydia pneumoniae. A chronic cough ensued, along with recurring laryngitis and pharyngitis and laryngitis, which can also occur with Cpn. I hasten to add that I would had thought these were related to viruses until I had reason to be so suspicious of Cpn.

Again, thanks. You've been so very helpful ever since I first came to this forum. It is really appreciated. I will start looking into AERD now because these things take time and persistence.

Take care.
Avatar universal
I forgot to add that if that treatment is considered unpleasant, it's no wonder people don't get treated for chlamydia pneumoniae or give up. It takes weeks or longer, and if it's the problem, your'e likely to get flu like reactions and, potentially, pain due to endotoxins. A choice out of this and the rest of my life with breathing difficulties -- well it's no choice.
Avatar universal
Yeah, I agree.  Sometimes treatments are bad, but the possibility of something being able to dimish symptoms far out weighs that "bad" experience.  Life with the symptoms continuing is much worse.  I felt that way about my Neutrophillic Asthma treatment, fungal infection treatment (sputum sample showed two fungii - one had to be identified by state health), and AERD treatment.  All were well worth it.

Regarding, "One thing I haven't been able to ascertain very easily is how common it is for those affected to have symptoms that persist despite avoidance of NSAIDs."  ALL AERD suffers should continue to have symptoms despite strict avoidance of NSAIDs.  AERD is said to be a "self perpetuating" disease - once it starts the only thing that stops it is aspirin desensitization.  Part of the reason for that is that aspirin is salicytic acid which is easily derived from the bark of willow trees.  The chemical is present in just about every plant including almost every fruit and vegetable to some degree.  It is impossible to eat a healthful diet and totally avoid the chemical.  You can research Salicylate Free diet for some info to help with that.  There is a good article on a site about chronic uticaria (chronic hives).  Aspirin is the cause of AERD, some cases of chronic uticaria, and some ulcerative cholitis cases.

You are an extremely good candidate to have AERD - severe, persistant asthma, nasal polyp, known reactions (some severe) to NSAIDS, and (if I remember correctly) chronic sinusitis.  That is classic Sampter's Triad (AERD).  Aproximately 20% of all asthmatics have AERD.  About 40% of those with chronic sinusitis have AERD.  Considering that you have documented reactions to NSAIDs and nasal polyp history - you are very close to a 100% likely hood of having it.

I will tell you that the two years preceding my aspirin desensitization, I had an infection about every two to four weeks.  I would get over one with anitbiotics, go off antibiotics and then cycle down into another infection in two weeks.  The month before treatment was one long infection and 50 days of prednisone.  UGH!!!  Since the treatment in May, I have had two minor infections.  One did not go to my lungs at all.  The second did, but it did not cause an asthma flare, more like just irritating coughing.  lol...  That might sound bad to some, but I am used to coughing so hard I gag and being incompacitated for at least a week. For me, that was truly minor.  Treating AERD reduces the inflamation in the lungs which leads to fewer infections as there is less mucous present for bacteria to grow in.

I have a masters degree.  I like to do research as well.  I feel that it is my health.  I have to be as informed as I can be to be a contributing member to my health care teem.  My doctors may be the ones to diagnose and suggest treatment, but they are not calling the shots.  I am.  My GP did not think I had AERD.  Normally I follow his gut instinct (it has been right more times than I can count).  This time, my allergist told me about it, the basic mechanism of the disease and started the research.  Then I was pushing for the treatment, despite what my GP thought.

I am glad to be of help.  As you can see, I have traveled a long road, and been a "guinea pig" at times.  I have learned a lot.  If what I have learned and experienced can get someone closer to healing faster than I got to where I am today, I want to help them get there.  That is why I am here.  

God bless.
209987 tn?1451935465
Just wondering about things after reading all of this AERD talk...is it possible that beer could trigger an attack the same way?

My hubby takes absolutely no pills...but he does drink...he's an alcoholic...and 3 beer affect him the same way that 12 would affect a non-drinker.
His coughing etc is way worse after drinking.
When he first got out of the hospital he felt like a million bucks...3 months later he started drinking again...now he's almost back to where he was before going to the hospital.

Just curious as to what your thoughts may be.
Avatar universal
Thanks yet again.

Yes, you recall correctly that I have had chronic sinusitis and therefore, yes, Sampter's Triad. Interesting percentages indeed! I'll try to check out the diagnostic specificity and sensitivity, as well as the actual basis for diagnosis, to get a better understanding of this. This is just because I'm a quantitative researcher. However, you've certainly convinced me to get onto this as soon as possible. I can see my GP groaning as I bring in yet more research to discuss, but I'll just have to see how I go there.

You said:

"ALL AERD suffers should continue to have symptoms despite strict avoidance of NSAIDs.  AERD is said to be a "self perpetuating" disease - once it starts the only thing that stops it is aspirin desensitization."

I hope you don't mind another question in light of your answer. I used NSAIDs for several years with back pain before becoming anemic and having an awful experience. I had iron infusions in 2002. I was not diagnosed with or treated for asthma. I certainly experienced difficulties breathing. Of course, at the time this was attributed to anaemia, and it goes without saying that my breathing difficulties would have been at least in part because of anaemia. However, it is quite possible that my breathing difficulties were also partly due to NSAIDs.

My question relates to what happened between 2002 and 2010. Last year, I started on asthma medications, and indeed you greatly helped me get a picture of things. In the eight years in between, I certainly had chronic sinusitis. It wasn't until last year, after two infections (of whatever kind) that went into the chest that I needed to start asthma meds. Having said that, I also discontinued caffeine, and I had what seemed to be a never-ending "withdrawal". I later came to think I was self-medicated asthma with caffeine, and if I recall correctly, you were the same (?).

So my question is: do you know whether AERD generally progresses to include asthma straight away (with polyps and sinusitis) or could there be a delay? Do you know? I will, of course, see my GP and a specialist to ask this.

Having asked that question, of course I can see the very real possibility I had Sampter's Triad from the period of taking NSAIDs from around 2000 to 2002, in any case.

I've added some more below. I *seriously* appreciate your extraordinarily generous help: I add the following in case of interst to you, or anyone else in the future, and because I can't help wondering ...

******

In 2002, I basically diagnosed myself with Diabetes Insipidus (which for anyone who doesn't know, has nothing biologically to do with Diabetes Mellitus (which people usually mean if they just say Diabetes). I hasten to add that an endocrinologist diagnosed me, and one with a PhD in vasopressin (so he knew what he was doing). I initially requested the tests from my GP and the tests confirmed what I suspected. However, the Diabetes Insipidus disappeared in time and possibly quite quickly.

Interestingly, I believed there may have been a link between my NSAID use and Diabetes Insipidus. My endocronoligist believed the Diabetes Insipidus was most likley auto-immune (essentially due to inflammation of the pituatary) by ruling out other causes. A principal basis for this was information from my MRI -- and he noted that I had a nasal polyp, which he said was common.

Now, my anatomy is pretty bad. I know the pituatary cannot be too far from the sinuses and I wonder whether it was part of a more general inflammation. Of course the "itis" in sinusitis just means inflammation.

I have reason to think that my (transient) Diabetes Insipidus has been linked to NSAID use. I was diagnosed with it after long-term NSAID use and anecodatlly, it seemed to wax and wane with NSAID use.

The point is that I had a horrible period health-wise, which seemed to be all about Diabetes Insipidus. However, I now wonder whether it was all related to NSAID use, and things got better (although only to some degree) because I got off NSAIDs.

Take care.
Avatar universal
Your comments have triggered me to do look into Samter's triad, AERD and salicylate sensitivity more generally.

I note from a peer-reviewed paper (Aspirin-sensitive asthma 2005) "there's a lack of diagnostic testing, other than challenge procedures". The same could be said of asthma in general for many. So while I see (approximately) the percentages you cited, these need to be treated with some caution because any statistic cannot be clear-cut (by definition) without a clear basis for diagnosis. Much the same applies to Mpn and Cpn infections as (partial) causes of asthmatic symptoms. The little peer-reviewed research I know of on this indicates around 50% of asthmatics have these bacteria (although I stress that the research involved a relatively small number of participants). I can't find where you get the 20% of asthmatics with AERD; according to the paper Diagnosis, prevention, and treatment of adverse reactions to aspirin and nonsteroidal anti-inflammatory drugs "Patients with asthma have an 8% to 20% chance of experiencing asthmatic attacks after ingesting ASA and NSAID. If such patients have associated rhinosinusitis (polyps), prevalence increases to 30% to 40%. Patients with chronic urticaria/angioedema have a 21% to 30% chance of experiencing an urticarial flare after ingesting ASA and NSAIDs." The percentages you cited are on the high end of this, but I'm sure there are other sources. From the little I know, I'd probably agree with you AERD is likely for me if I have/do experience asthmatic symptoms with aspirin. I honestly don't know because as I said, it's been decades since I've had it. It surely seems a good idea to try the challeng, under supervision of course! (Couldn't agree more about hospitals not necessarily being the place for it, but I won't go into the reasons I say that here).

I note from the salicylate sensitivity forum that many people have found it difficult to treat the sensitivity, although there are papers such as "Individual Monitoring of Aspirin Desensitization" that provide evidence for its efficacy (as typical with this kind of research, very small numbers involved). Also, as someone said on that forum, it tends to be the people who aren't successfully treated who post or continue to post.

From what I can tell, the people included in some of the studies have pretty severe symptoms (e.g. sense of smell affected, naso-ocular symptoms not just nasal). Of course, researchers quite understandably tend to take the most obvious cases for such studies to make things as clear-cut as possible, so that may or may not mean much.

I'm weighing things up here. There's a paper "Aspirin-induced asthma as a viral disease" and as you say, less inflammation means less chance of bacterial infection, an obvious reason for infection and AERD to potentially compound one another.

It certainly seems a good idea to have a challenge test, so I really hope I can get that done soon. In the meantime, I still think it's best not to assume single cause. There are very good reasons to think I have Mpn or Cpn infection, because so many do. Unfortunately, Cpn infection can be really difficult to eradicate. For example, the treatment you had (~2 wks clrarythromycin only) is very unlikely to have eradicate Cpn. The (highly cited) paer I refer to above involved a 6 wk course of clarythromycin and a microbiologist who has studied this nasty bacteria a great deal thinks that a combined antibiotic protocol is necessary to really eradicate it.

Your story is compelling, as is the story of the guy who told me about Mpn and Cpn, who was told he had asthma for a couple of decades, and completely eradicated it. At this point, I think I have cause for optimism on two fronts now! That's great.

I surely know what you mean about being a guinea pig. How long have you been better so far since the de-sensitization?

You have a Masters? Seems to me you should do a PhD with your obvious passion and capacity for research.

Take care,

168348 tn?1379357075
Great thread .. enjoyed reading all the awesome asthma info.

C~
Avatar universal
Hello again,

Your are very right about the numbers.  There are so many differing studies, and the disease is highly underdiagnosed.  Acurate percentages are impossible at this point.  I believe the numbers I referred to were from the latest studies I read.  The general trend I observed from the studies I read is that the numbers are increasing as accurate diagnosis becomes more common.

What I read is that the disease usually begins in the mid to late 30's with chronic sinusitis with or without nasal polyps.  Then, as the patient reaches their early to mid 40's, they develop asthma that is progressively worse and can (usually does) become prednisone dependent.  Your 2000 to 2008 time span would fit that time line (sans your age which I don't know).  The ages are just generalities.  There are children with the disease and old people that deveop it as well.

My doctor and I were pretty sure that if I had Neutrophillic Asthma, it was from mycoplasma.  We also had treatment for bronchiecstasis on the table.  That treatment is a higher dose of clarythromyacin for a longer time.  I believe the treatment I had was sufficient for that aspect of my asthma puzzle.  I just had to get to the aspirin treatment at somepoint to really see long lasting improvement.

I will have to look into the salicylate community.  I didn't know there was one.  I am one SUCESS story.  I stick around to share my story and encourage others.

I have been better since early May this year, about 3 1/2 months.  I could tell a HUGE difference 5 days after the treatment.  I was at a party with about 50 people in a small space.   For the previous two  to three years I had been HIGHLY reactive to ANY odor, perfumes and fragrances in particular.  There were a number of what I had come to call "toxic clouds" in attendance, but I didn't not react.  I see those same "toxic clouds" on a regular basis.  I had always reacted to them before.  

I had been looking for a job, but had given up because I did not feel I could be a reliable employee.  I was sick too often.  Three weeks post treatment, God landed a job in my lap.  LITTERALLY!!  One close friend ran into a mutual friend whose husband was desperate to hire someone with my skills.  I had been continuing to improve since the treatment and had been three weeks without pred or antibiotics.  I felt like I could be a reliable employee.  He offered me the job and I took it.

haha... a PhD...  Let's see.  It took me 2 years to write my master's thesis.  My degrees (BS and MS) are in mathematics (from a major state university - one of the top ten math depts in the USA when I was there).  We write proofs, not papers!!  While I would love the acedemic atmosphere of classes and tests (I actually do enjoy studying for and taking tests), I abhor writing papers!!!  As much as I am on medical boards you would never guess that!!  lol...  I am really passionate about helping people with this disease.  It can be so issolating.  I like helping people feel that there is someone who can relate to them and their unique challenges, even in a small way.  Knowing that someone in the world has some similarity to your situation is comforting.  

I am also passionate about writing about my faith.  My faith in God and His love and compassion are what saw me through the darkest times.  He doesn't promise easy times.  However, He does promise to go with us through the hard times.  Over the last few years, everytime things were the darkest, and I was getting depressed, He was there with new hope, support, kind words... whatever I needed to carry me through.  In His timing, He brought the aspirin treatment into the picture.  The intervening time was very special to me as I learned a lot about myself, drew closer to HIm and learned a lot about showing compassion for others.  I wouldn't trade the last 3 years for anything - now that I am on the other side... lol...  

God bless.

Avatar universal
I almost didn't see your post nested among our long ones.  I was just skimming right past it to refresh my memories.  

Your husbands situation sounds different to me.  Several things can be at play with him.

First, sulfite allergy.  Sulfite are common chemicals in alcoholic drinks.  He couls also be having an allergic reaction to any of the ingredients.

Second, GERD.  Alcohol relaxes the sphincter muscle at the top of the stomach.  This allows stomach fluids, including but not limited to acids, to seep into the esophagus or actually reflux  up into the back of the throat or even the sinuses.  These refluxed fluids can then be inhaled causing asthma like symptoms.  

Also, alcohol does harm the heart.  He could be in early stages of heart disease whice can also mimic asthma.

I hope you find answers for him soon.  

God bless.
Avatar universal
A mathematician huh? Wouldn't have pegged you as that. My PhD has quite a bit of mathematical/formal work in it. You can write just fine, no need to do mere proofs (I have a bit of a love-hate relationship with math but that's a whole different story :).

It is certainly encouraging that you had such a definitive response, even better that it was so quick. I'm sure you did have any bacterial infection sorted out given your response. Just for the reference of anyone reading, it's really difficult to tell whether someone has chlamydia pneumoniae. I'm sure you didn't, but I doubt you could possibly have known. Just for the record.

I'll see my GP and try to find someone around who can do the de-sensitization. It is certainly worth a try, and like you, I know how to take charge of my medical care. I have a PhD student who knows her immunology also, and has good connections.

I'll respectfully disagree that a deity helped your situation: clearly you've helped yourself. Granted, there are mysterious forces beyone what we can understand, but I personally reject any form of anthropomorphic deity in favour of pantheism and some of the most ancient of Buddhist traditions.

Four weeks of clarythromycin now. I will definitely be looking to keep the treatment going for up to eight weeks. The timing could work well to look into desensitization now, with a view to doing something in a few weeks if I don't start to improve.

Oh, my age fits with the profile, on the one hand, but I am skeptical the course of the disease can be that well understood. I certainly hope I don't end up with severe asthma to the extent you've characterized. I would think parsimony strongly favours a bacterial cause, but the real test will be my response to the treatment. I will let you know how I go with desensitization, and may be back with more answers. I think it's just great that you've pursued avenues to improvement and I say, now I'm optimistic on two fronts. Thanks once more bsmsl.
Avatar universal
lol... Shows just how much one can asume through a few posts on an internet board.  So what did you think I studied?  Mere proofs?!!!!  That is insulting!!  lol...

You are correct that we couldn't know 100% that I didn't have chlamydia pneumoniae.  Diagnosis was based on history.  I had a well documented repeated history of mycoplasma pneumonea over a thirteen year span - at least once a year.  That is one of the major indicators for possible Neutrophilic asthma.  I wasn"t really concerned about chlamydia.  I fit the profile for the other.  For me, the "numbers" were very good that treatment for Neutrophilic asthma caused by mycoplasma could be a root cause - a matter of probability.  

I hope things work for you.  Asthma can be a real puzzle to figure out.

God bless.
Avatar universal
I didn't mean any offense with the "mere proofs" comment. Just have had dealings with one too many who confuse (pure) math with science in my field and other fields. That has nothing to do with you! :)

Gotcha on the reason you thought it would be mychoplasma pn if anything, makes perfect sense.

I think it's great you look at asthma as a puzzle to figure, which is quite contrary to the usual line that one necessarily has to live with it. I have no doubt some do have to live with it, but I'd be surprised if many of us can't do something about it. I have all the signs of an infection, and it seems entirely reasonable to be treated for such. And I greatly appreciate your pointing out the possibility of 'aspirin' sensitivity, which I will puruse (indeed, I've already stopeed paracetamol use because of the question mark over it).

I hope you don't mind if I come back to you with questions about AERD if I have them. Thanks, as always. I'll certainly keep people posted on how I go on antibiotics in the long-term.
Avatar universal
lol... I just have to ask what your field is.  You don't have to answer if you don't want to.

LOL.... I will never be so sensitive as to be offended by any saying negative things about mathematics.  The "mere proof" comment was a joke.  As for pure math not being a science....  I have to laugh.  My degree is in pure math because I can't stand application (physics, chemestry, engineering...).  Throw some abstract algebra or topology at me and I will be quite happy.   However, I do have to say that the cell phone you now carry would be worthless without the pure math field of fractal geometry.  So, yes, even pure math is a science and has real world applications.  

Maybe you should leave the math comments alone.  You seem to be digging a deeper hole.  ;-)  Truly, I am not offended.  Someone that is a math nerd has to get used to it.  

Feel free to ask anything you want about AERD.  That is why I hang around these boards... to help people.  

God bless.
Avatar universal
Well, broadly, my field is measurement. It's measurement in the social sciences, but I have expertise in measurement more generally, e.g. I'm involved in discussions about the new International System of units (VIM3) with a group, one of whom was an editor of a key journal in metrology (science of measurement). Various people in medicine use the quantitative techniques that I am expert in. Pretty much half of my family are engineers also.

Fractal geometry is fascinating but you don't want to get me onto "pure math" being a science with real world applications. I have a book by a physicist J. Roche called The Mathematics of Measurement: ... and let's just say there is no real world application of mathematics without measurement, and we measure actual "real world" quantities (lengths, masses, times, currents and so forth). I get 987931 from digits of e that repeat with only a short sequence in between. (I memorised e to more than 1000 digits as a kind of experiment). I rue the abuse of mathematics, particularly but certainly not only in statistics, and nowhere is the abuse of statistics worse than in Medicine (I mean abuse in the original sense of the word, so more like misuse). A discussion for another forum I'm sure you'd agree ;)

Now, I really gotta get an appointment with my doc to start looking into a possible sensitivity to NSAIDs.

Take care.
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