NTM Northwest Support

A Pacific Northwest support group for sufferers of Nontuberculous Mycobacterial (NTM) Infections and Bronchiectasis

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#1 2020-05-19 19:09:49

CynthiaF
Support Group Chair
From: Bellingham
Registered: 2016-05-30
Posts: 177

THE NTM /Bronchiectas PALM SPRINGS SUPPORT GROUP MEETING, MAY 2020

NOTES FROM

CA Group
New Members
On May 11, we welcomed two new members to the group.,
both living in areas of Southern CA outside our immediate area.
Traveling to our face-to-face meetings is not possible because
of the long drive, so the phone conference call works well for
them.
One of our new members has been very active her entire life.
She has done lots of interesting travel and has visited almost
100 countries. Although she is still active, she has been less so
since being diagnosed with NTM in 2016. She has found a
knowledgeable doctor in San Diego and is checked 2x/yr., with
a CT scan once a year. Her sputum cultures have been done
less often, but she had recently taken one in February, which
was not viable. We suggested she ask about a sputum induction
when she feels safe enough to have one done if she is unable to
produce sputum on her own.
Our other new member is from the Ventura area. She works
from home as a graphic designer. She was originally diagnosed
w MAC in 2010, but her diagnosis was m. abscessus in 2019.
Her doctors in Santa Barbara were knowledgeable about NTM,
and gave her the information she needed to understand her
disease and make informed decisions about her treatment.
This doctor is one that specializes in Cystic Fibrosis (she has
the CF gene), which has a great deal of overlap with NTM. She
recently started on antibiotics, oral, inhaled and IV’s for 3
months. Her present protocol is 4 antibiotics, consisting of
orals & inhaled.

CT Group:
On May 18, we held our Zoom meeting for 10 attendees. One of
our newer members had been doing well on Arikayce for many
months, until he recently started coughing up blood. The cause
could be a side effect from the Arikayce or from NTM. A CT
scan was recommended by his doctor, which might uncover
more information. He found the CT scan in NY was superior to
the one at his local hospital in CT, so he traveled. The results
are pending. We know that having NTM can be like riding on a
roller coaster, having its ups and downs.
Another member has been on the 3 drugs for MAC
(ethambutol, rifampin & azithromycin). Although her
symptoms seemed to have abated, her sputum is green. This
could indicate infection.
Someone asked about the use of Arikayce and the possibility of
side effects. One person said she felt no side effects outside of
some hearing loss. It’s been a great drug for her because her
cultures have been coming back clear, so she is not too
concerned about the hearing loss.
One person mentioned that she had been feeling dizzy when
using the Acapella. She recently substituted 7% nebulized
saline for airway clearance, and finds she is bring up more
secretions and feels more clear in her airways. It was
suggested that if she resumes the Acapella or Aerobika, she
should try dialing down the pressure for an easier flutter.
How often do the group members sent in their sputum
cultures?

In the CT group, most said 3-4x/year, unless they are
experiencing a secondary infection, in which case, they would
be tested additionally during that time. One said every 6
months. Another said she hasn’t been monitored in 12 years,
but promised she would start doing it more often.
Established patients can send their sputum samples to
National Jewish by calling their lab and requesting sputum
mailers (303-398-1339). If not a patient of NJH, and would like
your samples processed in their lab (their procedures to test
for NTM are most detailed), you can ask your doctor to request
it. The results will be sent directly to your doctor. Samples
must arrive within 5 days of production, either by overnight
mail or by priority mail. For those sheltering in place, and
wanting to avoid going into the Post Office, you san set up an
account with Fed Ex to pick up your package at your doorstep.
We are investigating what is offered by USPS. On the USPS site,
note the following: Priority mail must be dropped off at the
post office for weighing and labeling. If you leave the mail
out in your mailbox, it won’t be shipped as priority mail. You
also have the option of scheduling a pickup online, if you
can’t get to the post office, according to a statement found
on their website. If anyone has done this, please let me
know the logistics.

To Use or Not To Use Albuterol for Airway Clearance
Some physicians prescribe albuterol to be used in conjunction
with hypertonic saline when nebulizing, and others do not.
This recommendation is based on the doctors’ philosophy,
degree of disease and results of radiology, sputum and lung
function tests. Albuterol can open the airways to help in
bringing up secretions. However, albuterol is not without its

side effects in many people, which can include shaking, racing
of the heart and dizziness. For those patients who are
prescribed albuterol, Xopenex can be substituted, which is said
to have less severe side effects. This drug is more expensive,
and needs special approval by your physician to be covered by
insurance. Some in the group were able to receive
authorization by their insurance companies.
Cleaning of Nebulizer/Aerobika Equipment
The manufacturer suggested instructions are not necessarily
geared to NTM patients with resistant bacterial infections. The
best instructions are found on the National Jewish Health
website. It is recommended to place the nebulizer cup and
Aerobika (or Acapella) in warm soapy water daily for 15
minutes. Sterilizing should be done weekly (if using hypertonic
saline). Boil parts in water for 10 minutes, then air dry. You can
also use a steam bag, adding ¼ cup water, microwaving for 3
minutes. National Jewish suggests sterilizing once a week by
placing the parts on the top shelf of the dishwasher when
running a cycle. It was advised not to deep clean more than
1x/week, as it can weaken the device, and would be necessary
to replace more often than every 6 month for the nebulizer
cup, and once yearly for the Aerobika.

A Tip on How to Get Through Home Confinement
Now that the weather is getting warmer in the northeast, some
of our members have planned outdoor “socially distant” happy
hours. Small groups are bringing their own food and drink and
socializing with friends, maintaining a minimum distance of 6’
apart. Much of the research indicates that contracting the virus
is low risk outdoors. When taking outdoor walks, be sure to
wear masks and keep your distance.

Interesting Articles
Eating Your Way to a Healthy Immune System
https://connect.uclahealth.org/2020/04/ … g-your-way-
toward-a-healthy-immune-system/
Maintaining Emotional Well Being
https://www.copdfoundation.org/downloads/MainEmtn-
Health-FINAL.pdf
Health Tips for Seniors and Tier Caregivers During COVID-19
https://connect.uclahealth.org/2020/05/05/covid-19-and-
seniors-adults-over-age-60-are-at-higher-
risk/?utm_campaign=20200507_covid_HealthyImmune&utm_
medium=email&utm_source=Eloqua
The Risks of COVID-19
https://www.erinbromage.com/post/the-risks-know-them-
avoid-them
Severe COVID Infections are Possibly Linked to a Preexisting
Mycobacterial Co-infection
(This is a viewpoint of the author. It’s an interesting theory.
Keep in mind there may be a conflict of interest, being the
president of a pharma company, and it is a discussion of severe
COVID cases.)

John D. Peabody III has a Ph.D. in organic chemistry and holds a law
degree from George Mason University. He is the founder and president
of PersisPharma LLC
Much of the print news and online commentary to date seems
to fundamentally miss the point regarding why the drug
combination of  hydroxychloroquine  and azithromycin might
be very effective for treating and/or preventing severe cases
of  COVID-19  infection worse, many well-known media seem
to be suffering from a derangement syndrome and have been
promoting stories that clearly misrepresent the potential
utility of hydroxychloroquine and azithromycin.
 important question that’s not being asked and answered is
why would an antiparasitic (hydroxychloroquine) and an
antibiotic (azithromycin) alone or in combination have
antiviral activity against this specific  coronavirus ? It would be
extremely unlikely that two old antimicrobial drugs with
historically different (typically non-antiviral activities) would,
by serendipity, have a direct antiviral effect (i.e., have direct
antiviral biological activity) against the COVID-19 virus.
Furthermore, why are most COVID-19 cases simply like a
“common cold” but in other patients (not just old people)
there’s a rapid unexplained progression that often leads to
death?
One explanation is that  the coronavirus potentially activates a
preexisting mycobacteria in a coinfection scenario  (see my
article on Medium for a more technical discussion).

In other words, hydroxychloroquine and azithromycin work
together to treat or prevent severe presentations of COVID-19
cases (when administered early enough) because they are
treating (suppressing) a preexisting mycobacterial infection
that has been activated by the COVID-19 infection.

The azithromycin is working as an antibiotic to treat a
bacterial infection (i.e., the activated mycobacterial infection)
that is attacking the lungs as well as other organs in the body.
The combination with hydroxychloroquine is important
because it enhances the antibiotic activity of azithromycin (by
increasing the pH of the cellular micro-environment).
Some have asked, “Why are antibiotics and not anti-virals
quelling the COVID-19 coronavirus” and have independently
surmised that it’s potentially because of a preexisting
mycobacterial infection (see the March 2  Bill Sardi article on
LewRockwell.com  based on an interview with Lawrence
Broxmeyer, M.D.).
The recent  National Institutes of Health (NIH)
announcement of April 21  regarding the guidance for use of
hydroxychloroquine and azithromycin in patients with
COVID-19 infection seems ambiguous and is misplaced (I
think).
On the one hand the  guidance states  that “[t]here
are insufficient data to recommend either for or against the
use of any antiviral or immunomodulatory therapy in patients
with COVID-19 who have mild, moderate, severe, or critical
illness (AIII).” [emphasis added]
And in particular, NIH states that “[t]here are insufficient
clinical data to recommend either for or against using
chloroquine or hydroxychloroquine for the treatment of
COVID-19 (AIII) … [and] [w]hen chloroquine or
hydroxychloroquine is used, clinicians should monitor the
patient for adverse effects (AEs), especially prolonged QTc
interval (AIII).”
But also in the same guidance it states: “The COVID-19
Treatment Guidelines Panel (the Panel) recommends against

the use of hydroxychloroquine plus azithromycin for the
treatment of COVID-19, except in the context of a clinical trial
(AIII) … [because] [c]hloroquine and hydroxychloroquine for
COVID-19 have been used in small randomized trials and in
some case series with conflicting study reports … [and] [t]he
combination of hydroxychloroquine and azithromycin was
associated with QTc prolongation in patients with COVID-
19.” [emphasis added]
The apparent ambiguity in the NIH guidance appears because
it states that there’s not enough information to make a
recommendation “for or against” the use of any antiviral or
immunomodulatory therapy—which necessarily includes the
drug combination—but then recommends “against” use of the
drug combination outside of a (formal) clinical trial.
The guidance “against” use of the drug combination
is misplaced, because it’s well accepted that drugs and
therapies are used “off-label” routinely by competent medical
practitioners to the benefit of patients without the
requirement of instituting and running a formal clinical trial.
It’s not clear to me that the available evidence regarding the
use of hydroxychloroquine in combination with azithromycin
supports a “risk/benefit” assessment that warrants a blanket
recommendation against off-label use.
The NIH guidance is also misplaced, in view of the fact that
treating physicians know that if certain “at risk” patients
(particularly older patients) progress to
intubation/ventilation it will be in most cases essentially a
death sentence.  Bloomberg , for example, reporting on a study
of New York patients, wrote, “The [mortality] rate was
particularly awful for patients over 65 who were placed on a
machine, with just 3% of those patients surviving, according
to the results.”

At risk patients on a case-by-case basis should be allowed and
encouraged (with their treating physician) to assess and to
choose between the potential risk of QTc prolongation from
off-label use of the hydroxychloroquine in combination with
azithromycin and the alternative risk of almost certain
terminal outcomes if there is progression to
intubation/ventilation therapy.
Understanding that the coronavirus  pandemic  morbidity may
be attributable at least in part to a preexisting mycobacterial
infection may be critical to identifying and deploying in the
short-term cost-effective off-the-shelf counter measures (e.g.,
the combination of hydroxychloroquine and azithromycin)
that will immediately save lives and potentially arrest the
panic associated with extreme manifestations of the COVID-
19 pandemic.
Telehealth Appointments at National Jewish
National Jewish offers telehealth appoints for Colorado
residents only at this time. There are licensing agreements that
must be obtained from each state. Hopefully this can be
accomplished in some reasonable period of time. We assume it
is a work in progress.
Debbie Breslawsky
5/19/2020

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