Wednesday, February 11, 2015

Not Asthma, But Addison's

It appears that undiagnosed Addison's (adrenal insufficiency) may have been the problem for decades:  I was always intolerant of stress(though with the help of Buddhist philosophy, I have managed it pretty well), had hyper-hydrosis, was unable to concentrate urine, had some questionable pigmentation (though subtle because of fair complexion) and have had a strong proclivity for adrenalin boosting activities.  I believe the  27 years of asthma medications may have ruined my lungs; my pulmonary function is now so low.  My lung symptoms began to be the marker that indicated when I needed another dose of cortisol or synthetic. Though I still am trying to promote healing, and now that I am going on 9 months without bronchodilators, I think I am very, very slowly improving.  I believe keeping a steady level of cortisol will allow my lungs to heal, if they are at all able.  Dr. Majid Ali has some great revelations about the nature of healing and exercise that are very encouraging and I believe help explain why the kayaking in the open ocean has been so therapeutic.  His books I strongly recommend.

Only after requesting a cortisol level from my new primary DO, did she immediately put me on hydrocortisone for an extremely low level (less than 2, when I should have been in the 20s)--and I was on prednisone at the time (since I was unable to be completely off of it because of slipping into respiratory failure).  Though I had been on a physiological dose, as opposed to a pharmacological dose, which would also explain why I had no ill side effects, I was only taking what my body could not provide for me.  So now I am trying to find an endocrinologist that deals with adrenal issues, not as common as you would think given Addison's is a 19th century, objectively identifiable, though supposedly rare, disease.

Monday, October 13, 2014

Over A Year Post Bronchial Thermoplastys, Improvement Only After Stopping Conventional Meds

In May, just around the time of the 1 year anniversary of the first Thermoplasty procedure, I had not improved noticeably, and actually found it more and more difficult to continue to work out.  I was totally dependent on nebulized albuterol and Xopenex in the metered dose inhaler.  I could not go more than  4 hours without needing more meds, I felt I was feeling more side effects than relief from these medications; foggy thinking, being totally fatigued first thing in the morning, waking and 4 am often needing a treatment, and feeling completely unstable virtually all the time.  So on another circuit ride with my husband to St. Thomas, with the ability to get to the island that brings me some relief, I decided to go off the bronchodilators.  In order to do this, I had to take prednisone; at first in large doses and then tapering down.  It was the most difficult thing I had ever done.  Having the ability to get to the island for hours at a time during this period, helped in the transition off the meds, and I was taking a moderate dose of prednisone 20-40 mgs.  When I got back home, all I could do was rest on the couch, and read--just walking across the room would send my heart racing to keep the oxygen level up, if I did something more strenuous, the oxygen level would fall below 90 and worse.  I began to use the pulse oximeter to gauge my condition, rather than the peak flow meter, which was very difficult to do, would cause worsened symptoms, and was depressingly low--barely over 100.  I struggled through 4 months of this.  My mother,was doing Reiki healing on me daily and I was using the Wellness 2010 electro device on lung and adrenal settings.  I was also listening to Dr. Joe Dispenza's audio meditation up to 4 times per day.  Reading his book, You Are The Placebo, was very inspiring and helpful.  Also reading about hypothyroid by Mark Starr and the undiagnosed epidemic of those effected resonated with me and some of my symptoms.  All the while I was trying to reduce my level of prednisone, which I found  most useful taking every 12 hours; initially 10 mg twice per day, then down to 5 mg. twice per day.  I found that wheezing would start when I was in need of the next dose.
Then I found a book by William McK Jefferies, Safe Uses of Cortisol, that seemed to substantiate my finding of a low dose of prednisone helpful and potentially safe.  Since prednisone is a synthetic (and 5X stronger med than cortisol) I suspect that cortisol could be even more helpful to me, as part of my problem since even before the asthma, was fluid balance --which the adrenals control with their output of aldosterone.  For as long as I can remember, I feel I am on the verge of dehydration, expelling more fluid than I take in; even more so when I am experiencing breathing problems.  And I fit the profile of a person that may have exhausted their adrenals early on due to childhood stress/trauma.  I am looking for a Dr. that may be able to help me, after a disappointing visit to my lung specialist and primary care Dr. in September; who are not in agreement with my stopping the medications; and are unwilling or unable to understand my thinking about an adrenal issue being the underlying cause of my problems.   But after nearly 5 months of not being able to work out, I began to recover to the point where I could work out, at least mildly.
I find when my blood oxygen is in the upper 90s and my pulse is a good 40 points lower than that, I am good enough to work out, and this has translated to a peak flow of nearly 250.

This first thing I noticed after stopping the conventional bronchodilators, was feeling much more clear headed in general and much more awake in the morning.  Though my breathing was very poor (peak flows barely over 100) and blood oxygen equal to my pulse (or pulse would be higher than oxygen), I felt more stable than being closer to 200 on the meds.  I found I had no appetite when my pulse was within 10 points of my oxygen.  Then I had some skin reactions; I believe this may be a detox of some of the chemicals that I had been inhaling all those years.

I am still experiencing some fungal? reaction on my chest,  arms and back; but nothing more on my neck and no more scabby, open wounds on the chest.  Maybe this is from a fungus or mycoplasm hopefully leaving my lung area.  It doesn't really itch or stand out as much as a ringworm infection. Another helpful resource was a little book by Walter Last; Overcoming Asthma.

For a time I was nebulizing or vaporizing some alternatives like iodine, dried and tinctured herbs, ionic silver solution and magnesium oil, but with my lung function so low, I found any foreign substance irritating, so I stopped all inhaled substances.

It appears that  I am now on a healing trajectory, any may be helped by supporting my adrenals with a little cortisol and perhaps aldosterone, but it might just take more time for restoration of my adrenal function and therefore allow more healing of my lungs.  While I am waiting to be evaluated by a doctor, I am taking some licorice root, slippery elm and lobelia to help support adrenals and lungs, as well as some pregnenolone (the mother hormone of cortisol and aldosterone, and available over the counter).  While I have been reducing my prednisone to 2.5 mgs once or twice a day on the days that I do not workout--working out creates an exhaustive situation that more prednisone helps remedy.  I plan to see a integrative/functional Dr. in November, so may find some help then.

Friday, June 7, 2013

Bronchial Thermoplasty At Last

One week ago I had my first Bronchial Thermoplasty procedure at Cleveland Clinic, FL.  Dr. Oliveira did a flawless job!   Just the week before I was scheduled for an adminstrative law judge hearing to appeal my insurance company's decision to deny covering this procedure; but, strange timing, my insurer called me the day before and said that they had reconsidered and would cover it after all.  A recent 5 year study release on the continued benefit to  the initial test subjects, apparently lent itself to my insurer's change of heart.

The first of three procedures treated my lower right lobe.  My FEV1 was 42% before the procedure, I did a peak flow as I was leaving the hospital a few hours after; it was 296, which is on the high end for me.  I believe that the anesthesia and other drugs kept the swelling at bay initially, so I was more clear for a moment.  Then the area treated swelled closed entirely--I could hear the density when I tapped on that part of my lung.  But I felt a little more energetic than normal, I suppose because of the temporary lung volume reduction, though my peak flows were still low.  I was on prednisone for about 5 days after and I have been using Xopenex in the nebulizer but alternating with magnesium sulphate solution and an Agricept-L solution.  These two treatments I am doing to help reduce inflammation and prevent infection.  My post anesthesia sore throat went away quickly with these.  I am also inverting myself periodically to prevent any fluid build up.  Initially my peak flows were close to 200, but now they  are closer to 250, and gaining stability.

Part of the reason I sought out the alternatives to use in my nebulizer was the vaso constricting effect of the typical bronchodilators; my primary Doctor had me unsettled with his feeling that I was starting to have some pulmonary hypertension.  I had worked out before my last visit to him, and he was concerned about my bulging neck veins.  A subsequent echo cardiogram, that I also did post workout, apparently suggested that an estimate of my pulmonary artery pressure was around 40mmHG, which would place me in the PH realm.  However, echo cardiograms are not used to diagnose PH, only a right heart catheterization can do that.  A visit to a cardiologist and his manual exam determined that PH is not an issue for me, yet anyway.  It is always darkest before the dawn.  Now with the BT, I have some hope of relieving some of the pressure that the 27 years of out of control asthma has or could have on my heart.  So now, post procedure, I am able to be somewhat stable with 2 Xopenex nebulizer treatments and one magnesium and one Agricept-L per day  (these have a more subtle bronchodilator effect, raising my peak flow about 10 points).

I inadvertently found a therapeutic island in the open ocean currents off of St. Thomas USVI.  My husband was on a work circuit ride for two weeks in March and again in April of this year.  I had been kayaking to small islands just offshore of Cyril King Airport; the Flat Cays.  And in taking my regular peak flows noticed when I had kayaked and spent several hours on this particular island, Little Flat Cay, I would not need to use my bronchodilator to row back, and the next day my peak flow would peak at around 300.  My conclusion is that these open water currents (it is about 2 miles off shore) carrying water from the North Polar region as part of the North Equatorial Gyre, must be full of negative ions and very positive energy.  These islands are very barren wildlife refuges, but anytime I am back, I plan to get out there myself or with help.

Friday, October 19, 2012

Things That Have Not Helped and Those That Might

 I tried Respitrol for over 3 months with no significant effect.  The same has been true with the T. Asthmatica supplement.  I still take the Astazanthan,  R-Lipoic Acid, and Serrapeptase supplements--those are for more general well-being; though the serrapeptase may someday have a more obvious effect on the scar tissue in my lungs.  I have added the three Native Remedies pictured.  I believe if I stick to some form of homeopathic, perhaps I can undue some long term damage over time.

I have installed an EarthCalm EMF protection device in my home, just incase I am overly exposed, thus hindering my ability to heal.
I have installed a Q-Link personal energy harmonizing device on myself--I have noticed frogs become very calm when I pick them up while wearing this.

I am still waiting for an administrative hearing for the Bronchial Thermoplasty--I am in the process of getting a self-pay quote from the Cleveland Clinic, as I do not feel I can wait much longer.  If my function falls much further, I will no longer be a good candidate.

I can't really fly/paraglide right now, or travel--the air/chemicals in hotels and strange places do a number on my breathing. I can still kayak and workout--though only short intervals of running.

Saturday, June 16, 2012

Waiting for BT

I do not post frequently because most of the time I continue to struggle with little change in my condition.  I am grateful that it does not get too much worse, that apparently some of the alternatives that I have initiated are helping me to stay that way.  Right now I am not able to run more than a few 45 second intervals within a 20 or 30 minute walk on a treadmill.  I use this WellnessPro 2000 every few days in an attempt to get my lung cells to repair and behave more normally.  It is tedious, as the cycle of frequencies take about 3 hours to complete.

I continue to see my 5-elements acupuncturist, but she is only in town once per month.  I have been trying Neumactil Bio Gel--it is rubbed onto my chest and neck nightly.  I have been dealing with a sinus infection since May 17 and have not had to resort to taking prednisone (which is atypical for me). The R-Lipoic acid and BioAstin are anti-oxidants, and the Himalayan salt inhaler I am trying to see if it can help my sinuses and lungs generally.  I still take serrapeptase, iodoral, and an vegetarian/algae omega 3 supplement; Ovega-3.

 I am have added another pulmonary specialist at Cleveland Clinic in Weston, FL in order to try to have a Broncial Thermoplasty procedure.  Just now I am attempting an appeal to my insurance company in order to overturn a denial.  I continue to need to switch around my conventional medications because they lose their effectiveness over time.  Now I am using Xopenex 2-4x per day and Qvar40 2-4x per day.  I seem to have a problem with the long acting bronchodilators, so I am avoiding those.  The Xopenex works well, however the effect wears off in a few hours and with the Qvar I will up the dose as I have more problems maintaining my peak flow; it ranges  from 150-300 daily both being rare, it typically stays close to 200.  I feel okay to exercise when it is around 250.

Monday, August 29, 2011

2011 An Off Year For My Breathing

The year began with
some supplement additions, Iodoral--to boost my thyroid function, Black Seed oil to help my immune system. I did not give the Holy Basil a good try I did not want to confuse matters with the Iodoral. Immediately I got a nasty case of angular chelitis--my feeling is that it was a toxic dumping due to all the metal dental work in my mouth. As Iodine pushes the heavy metals out of cells as it is itself absorbed.

My specialist changed my inhaler to Dulera, which suits me a little better because I can use the full dose: 2 puffs 2x a day when I am having issues, and reduce it to 1 or 2 per day when I am more stable. But though I have had a few brief periods of decent breathing and some running. At the moment I am not able to run; I have been using other cardio machines at the gym. I am extremely fatigued.

I lost a very close friend this January and then a very beloved fur child this May. But in the early spring I have begun to learn to paraglide. A perfect sport for someone who is fit in terms of strength, flexibility, and enough cardio to get airborne (with a winch) and land; but somewhat compromised when it comes to cardio endurance. This has been uplifting and has helped me to deal with the great loses.

Saturday, December 18, 2010

Freefall and Mineral Hotspring Therapies

On a trip to the western US this past September and October, I decided to try a skydive from Boulder City, NV. It felt great, though I did not have to breathe long at 15 thousand feet, and on the fall the air rushing through my nasal passages at 120 mph felt pretty good. Adrenaline is a good bronchodialator. My lung specialist later told me that he never would have approved; I suppose it will be my last jump.

I had 3 soaks in this amazing spring at Pah Tempe near Hurricane, UT and felt better afterward; my peak flow improved. However, this trip wasn't without its health costs; the chilling weather and the altitude in some places was a real challenge. I believe that my adherence to the ALCAT recommendations made me more stable and able to do pretty well (though most of the time not well enough to run); I only needed prednisone on one day. I hope to make it back to this spring in the next few months.

I ran a very small 5K race in Miami Springs in early November and placed 2nd in my age group.
I am probably world class for runners with COPD, because there appears to be virtually none.

On a visit to my specialist a month ago, I performed better than last year on my pulmonary function test; FEV1 52% of predicted pre-medication and 61% post. I do not believe my scarred lungs are necessarily permanently so.