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Old 10-04-2010, 12:35 PM   #1
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Need input and suggestions.

I am 60 and have had asthma since the 5th grade. Depending on which doctor I see, my asthma is called COPD or Reactive Airways Disease. I have permanent damage to my small airways, a likely granuloma in my left lower lobe, a nodule in my right upper lobe, minimal atelectasis somewhere on the left side, and scaring in the right middle lobe. I owe most of this to years of not being able to afford my medications.

When the EPA declared that CFC propellants in asthma inhalers was damaging the environment even though the drugs were inhaled and not sprayed into the air, the asthma drug industry changed to those horrible powder suck in drugs, and HFA inhalers. Up until two weeks ago I have been on both Spiriva and Advair. I was originally taking the suck in Advair but changed to the HFA inhaler when it became available. I have had problems with hoarseness and a cough and more asthma ever since the CFC propellants were taken off the market.

Three weeks ago I decided to explore my asthma/COPD, immune problems and hoarseness by going to an allergist/immunologist. This was after pretty much giving up on doctors for about 2 years. She has taken me off the Spiriva and Advair and put me on Dulera, but I am still hoarse, I still have a cough, my peak-flows remain the same before and after nebulizer treatments (they stay at 350) and I am still convinced the powdered meds have damaged my larynx.

The doctor is convinced reflux is causing my cough and hoarseness, and athma. I have been on Pantorazole since the end of 2004. I was on it twice a day until the insurance company decided I did not need it twice a day a couple of years ago. She changed me to Dexilant 60mg once a day.

Has anyone herer experienced hoarseness and cough since the CFCs were taken off the market? And has it affected your breathing and peak flows. I know that when my weight was at its highest, my asthma was far worse and I was refluxing more.

My internist has agreed to cope me in a couple of weeks to check my larynx, and the allergist/immunoligist wants to send me to a pulmonary doctor. I told her my experience with adult pulmonary doctors is that they do not consider adults as having lung problems unless you have have Emphysema or lung cancer.

I feel like I am going to be chasing my tail again unless the internist finds my larynx is damaged and causing the hoarseness, cough and the current daily asthma.

Would love some input, and/or your personal experiences and any suggestions on another tail I should be chasing.

Thanks, Maurene
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Old 10-04-2010, 06:21 PM   #2
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Hi Maureen,
I am sorry you're going through all of this but hang in there!
I have had chronic bronchitis since I was teenager and was a smoker for many, many years. I have a family history of COPD as well.
I have had many, many bouts of pneumonia, bronchitis, etc over the years which have led to some scar tissue and early fibrotic changes.
In addition, I have developed reflux which aggravated things so badly a few months ago that I was sure I was in heart failure.
My O2 sats on room air were high, so the doc decided to try supplementation and exercise at this point.
A few years ago I was a walking addict and had no SOB whatsoever. A few months ago, it took all I had to walk across the yard and I was sucking wind like mad.
I began a very slow progressive walking program which I thought would surely kill me a few times, and started taking the following supplements: Magnesium, Vitamin D, Fish Oil, Vitamin C, a daily multivit, Super B complex.
My research revealed that Vit D and Magnesium are being recognized and used with more frequency for asthma and breathing problems.

What I've learned is this. When I step off the Low Carb wagon, my body reacts to the carbs almost like an allergy. I get some chest tightness and abdominal bloating which affects my breathing.
I also took a little break or two from the supplements and felt a marked change as well, and not for the better.
I was amazed that I really could feel the difference!
I'm an RN and fully know the power of meds and supplements but I had my doubts about the vitamins, etc really having that much of an impact.
I'm sure with my health history, family history and being a long term smoker I am only buying some time before the doc needs or wants to bump up to the traditional med route, but for now I am doing all I can to make this work.
The weight loss is a no brainer also.
I have to get back to the strenuous walking workout I used to do. I was a skinny minny, my labs were all perfect and I rarely got SOB. I miss those days!
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Old 10-04-2010, 07:38 PM   #3
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Hello..

I know I have read somewhere..probably on an alternative medicine website..about...enzymes helping with the lung fibrosis...Im sure you could ask at a health food store..or do some research online...

also, I personally have some seasonal allergies...and take Elderberry concentrate...you just take a teaspoon a day....My son has Asthma...and also takes it....he has been able to get off all of his medication...and his lung function improved...Elderberry is a natural antihistamine.....

Jane
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Old 10-07-2010, 07:07 AM   #4
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Thanks for the posts ladies!

I have been taking B-12 2,500 mcg sublingually since the beginning of the year and I get very sleepy after about 20 minutes. I noticed in the allergist/immunologist notes that she thinks I am giving myself B-12 shots. I need to talk to her about this and how the pills make me sleepy.

She started me on Vitamin D 50,000 IU twice a week the middle of last month. I did a bunch of research and learned I what I am taking is D2 and not D3. I was hoping to see a big difference in how I felt immediately, but I have seen nothing yet.

I have some phobias about swallowing pills, and as it is, I take a lot. I do have Magnesium, Fish Oil, Vitamin C and a multi-vitamin in the house, but they just sit in the bottle. Back in the mid 1980s when my son was little and had horrible asthma, the school of thought was that antihistamines and decongestants were not to be taken. With the blessings of his pedi-pulmonary doctor I gave them to him religiously and they HELPED. Now pulmonary doctors do not have a problem with antihistamines and decongestants.

I have been off Spiriva and Advair for 3 weeks now, I think, taking only the Dulera, and switching over to the Dexilant for my reflux, and my cough is still the same, and my peak flows still do not change after the nebulizer.

I will look for the elderberry concentrate and force myself to take the vitamins I already have in the house. I have started walking one of our pasture lines when the weather is good. It is more like dragging myself around the fence line. Afterwards I DO feel more energetic.

Thanks for your input!
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Old 10-30-2010, 05:01 PM   #5
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Those of you with asthma...do you know what your most recent IgE test results are?

Pam
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Old 10-30-2010, 05:50 PM   #6
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Quote:
Originally Posted by nonstickpam107 View Post
Those of you with asthma...do you know what your most recent IgE test results are?

Pam
Interesting question Pam. My IgE is ALWAYS within range. Of recent, I have done extensive reading on IgE (immediate allergies and sensitivities) and IgG (delayed allergies and sensitivities) and allergy testing for IgE and IgG. I am of the opinion that timing is EVERYTHING! A prick test is one thing, but drawing blood for IgE and IgG allergies and sensitives, in my opinion, is going to be hit or miss depending when the allergic reaction happened in relation to the blood draw. If I ever make it back to the immunologist I am going to pick her brain on this subject as it seems there is much confusion within the medical field.

Until then, what do you think of THIS, my most recent chest x-ray report:



I am in the middle of my THIRD round of antibiotics to treat Pertussis and M. Pneumoniae.

I had my CT on Thursday and am waiting to hear from the doctor. Best I can figure is that the lower part of my right lung is collapsed, and who knows about the nodule. What will be, will be . . .

In the meantime, do you have an opinion as to what the report means. If you would like, I can PM you the 2 views of my x-rays, or post them here. or
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Old 10-31-2010, 07:47 AM   #7
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Your CT looks great, compared to MINE. I have: enlarged heart from all the meds over the years for breathing...I'm not well expanded...have half lung on left, and have several psudo nodules (and add more every year, sigh). But...medically, I don't 'dabble' in pulmonary things cuz it's too skeery for ME, personally.

If your lower lung was 'collapsed' you'd know it, speaking from experience. I don't see a finding of lung collapse? Where are you seeing that? They are noting a 'change' in the right base. It means that the change can 'cause' pneumonias and that's EXACTLY what causes MY pneumonias several times a year. It's like the bottom stays 'folded' on my right lung.

In people who cannot breath in long and deep, the small aveoli stay closed and these little sacs can 'collapse'. It's a very small part, and you need to be RELIGIOUSLY using your deep breathing techniques as much as possible. But doesnt' mean the 'lung' is collapsing. It's seen a LOT in smokers, ex smokers, and those with asthma and higher IgE and those who recently have had pneumonia.

Actually, the ONLY reason I get on the elliptical or walk fast is so these aveoli stay expanded...it causes me to breath deep. I don't miss my daily 'exercise' for that reason unless I am VERY ill or hospitalized.

My IgE (taken two weeks ago) is at 2400. Range: 0-150

Skeery...I reacted to a candy WRAPPER the other day (peanut butter taffy..orange...you know...) as DGS was eating it.

I hate this time of year! (LOL)

Pam

Last edited by nonstickpam107; 10-31-2010 at 07:50 AM..
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Old 10-31-2010, 08:51 AM   #8
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Hi Pam! Been looking forward to your response!

The report is from my chest x-ray taken last Tuesday. The CT was done last Thursday and the doctor's office does not have the report back as yet. I picked up the x-ray report and CD on the way to see the cardiologist and have my CT done. I was told by the PA that I needed the CT because of the nodule.

I do have chest pain across my upper back, in the center of my chest in the front, and across my entire lower back. I was sent to see the cardiologist because of a question on my EKG. It turned out to be MVP. I have known I have had MVP for some time now and thus far the regurgitation has been minimal. I asked for the CT report to be sent to the cardiologist too. Once he sees it he will decide if my MVP needs to be investigated further. There is a new history of aortic dissections in my family over the last 2 1/2 years (brother and then mother) and the CT will give the cardiologist an idea of how healthy my thoracic aorta is.

With regard to my chest pain, I keep telling my doctors I do not know if I could recognize a heart attack or aortic dissection because I often have debilitating fibromyalgia pain. I have grown tired of going to the doctor in so much pain that I need help walking and getting up on the exam table only to learn later in tests it is only fibromyalgia pain.

Since my Petussis and M. Pneumoniae went undiagnosed for over 3 months, I am assuming the chest x-ray reflects what has been going on in my lungs all these months. Since the PA did not mention the subsegmental atelectasis changes I started researching. I could not find any pages that included the word "change." I know I am permanent damage to my small airways, and I know I have scaring in some of the lobes. I figured from what I read subsegmental atelectasis change meant a collapse or fold in the low area of my right lung, and thus, explained my chest pain. I have been taking the nebulizer religiously.

You certainly have been through the wringer with your heath! I contribute my lung problems to years and years of not being able to afford my medication.

I know I am allergic to dogs, cats, horses, cows, milk, shell fish and all sorts of trees and grasses. All this from personal experience and confirmed by prick testing. The allergist did IgE blood work to see if I was allergic to wasp and bee stings, and informed me that I wasn't. I KNOW I am allergic, however, I do not get the huge red, itchy lump with tentacles for 24 to 48 hours. My reactions are delayed. I have an IgG reaction. Most doctors will put me on antibiotics when they see the red lump and tentacles. The immunologist insists I am not allergic even after I brought her pictures of my delayed responses. I once had the side of an ankle swell up to the size of a base ball days after a wasp sting.

I have never smoked and I do not drink. I went to the immunologist because my IgA and IgG are consistently low. My doctors are always checking them, but never have a plan. They are always checking my IgE. Just because my IgE is always within range, it does not mean I won't die from Anaphylaxis. Thought the immunologist could help me, but seems there is very little understanding on IgG responses. At least SHE was the one who tested me for Pertussis and M Pneumoniae. Otherwise, the internist was planning to give me some drug to numb my system to keep me from coughing. I am no longer seeing him!
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Old 11-02-2010, 07:07 AM   #9
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We with allergic bodies have to realize something. Doctors and medical staff don't say we are 'allergic' unless we have an anaphylactic response (quit breathing).

I found this out right away.

The difference between having a 'normal' IgE and having a 'high IgE' with anaphylaxis...is that with any IgE greater than 400...you have a great chance of becoming allergic to inahalants that you've breathed in all your life. No warning.

I contribute my lung problems to a family history where NO ONE except myself and my brother have outlived 48 yrs. old. (And most have died before the age of 19 with HIE).

I had most all of the scarring and the problems (and yes, I test pos. for pertussis, etc. titres) because when I was young...I was given NO asthma meds for over 17 years of my life. I have had 12 members of my family die during childhood from asthma.

I don't break out....much...I just stop breathing.

I will tell you...that a LOT of my aches, pains, etc. went AWAY with the addition of enough T3 and staying lowcarb. (hey...ya gotta admit having an extra 100 lbs. or so on ya doesn't help the breathing NOR the pain!).

Have you been told you have costochondroitis? (The pain behind the lungs, etc. stiffness in the back, around the ribs...is often THAT yet docs don't recognize that).

I kind of 'look on the bright side'. I've made it to 56 yrs. old. I've done a lot I'm proud of...and some stuff I'm not....and if He wants me now...so be it! In the meantime, I'm going to enjoy life. No matter what. Even if I AM housebound for the winter!

Pam
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Old 11-11-2010, 09:53 PM   #10
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Qvar really helps me!!!!!!!

Hi,

I was reading your posts......
I have adult onset asthma and tried many medications with not so good results. Finally, my specialist put me on Qvar.......what a difference.

Qvar is an inhaled drug with extremely small molecular size. It is successful in penetrating the smallest lung airways.

I hope this information is helpful.

drgary
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Old 04-23-2011, 04:19 PM   #11
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Historically, ALLERGIC reactions were ONLY respiratory and skin reactions. Now, with the widespread recognition that the chemicals in personal care, house hold care, laundry products, cosmetics, as well as other chemicals do cause a wide variety of problems, rather than removing the chemicals from the product, we are beign taught that we are "allergic" to something when we have any one of, ar a variety of symptoms at exposure to common products.
So yes. Medical people probably do see respiratory problems as allergy, or, possibly allergy. They also see some skin conditions as allergic reactions--hives, itch, redness, maybe even swelling.
If you are suffering OTHER symptoms, they are possibly reactions to chemicals in products.

I'm chemically sensative. Most, but not all of my reactions are respiratory of some sort: sob, coughing, resp distress (beyond sob) depressed breathing. Even so, those reactions are the known and expected reactions to chemicals, NOT allergy.

Recently, I bought a turkey sandwich at the local Safeway Grocery, from their sandwich area--made on the spot with lots of goodies. Almost immediately after eating it, two things happened: sob and an itch that went from behind my right shoulder across the back of my neck and a bit lower, into the left shoulder and upper arm. I have no idea what I was reacting to. AFAIC, it was both allergic reaction as well as a reaction to spice, condiment, or even curing process.

I've had to eliminate as many chemicals as I can from my life. That means few friends, minimal social life, and difficult shopping trips. One thing I've learned is that upper body exercises help me a lot. I've also added C and D to my pills. I have a hard time taking pills of any size, and so bought 2 pill crushers. I use one to crush potassium pills, the other I break both B and Magnesium pills along with D.
I've been able to go without O2 even for walking for a few weeks again, now, and this time, hope to be able to continue that throughout the winter.

I hope you've been able to find some relief. None of this is easy.
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