Mucous/Phlegm

I have a 13-year old niece who has developed Guillain-Barre' or ALS symptoms and is now almost totally paralyzed and on a ventilator.  Finally found the right doctor.  She is now on IV- Rocephini, Zithromax, and Flagyli.  After about 3 weeks on the Zith. and then 1 week on the Zith, this mild herxing began to produce a great deal of phlegm/mucous in her nose and throat.  We do suction her, but there is so much.  Has anybody experienced this before and are there any suggestions as to remedy it a little?  Would I be correct in assuming this is "herxing"?

 Thank you in advance.

Mike (mikej2323@hotmail.com<)

 

 My only experience with G-B is a friend in my past.  I almost did not write because I have nothing to offer except hope because you have found a very brave doctor.    This is another disease that is being treated by that kind of rare creature. 

Rica PPMSi  EDSSi 6.7 at beginning - now 2.  Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith,  cont. flagyli  total 35 pulses NC USA

3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

I have experience with mucus and phlegm.  Most of my infection is in my throat & sinus, ears and neck and head basically.  And even though I am on so many supplementsi and antibiotics I am suprised by the amount of mucus...actually...it's a TON of mucus.  The more antibiotics I take right now, the more mucus there is.  I am only three months into treatment and my doctor thinks the excess mucus is my body cleaning out all the infectionsi in these areas.

From what I have read about ALS and GB, there are infectious associations.  IMHOi this could be herxing, but you'd want to check for other infections that the abxi may not cover too.

Kristin

David and Kristin, Married Forever, on CAPi for FM and CFSi with Dr. P. Sacramento, CA

David and Kristin, Married Forever, on CAPi for FM and CFSi with Dr. P. Sacramento, CA

mike,

if she does not breathe herself ( I hope I have interpreted that right), mucus usually comes up because of bacteria and dust, which are not "coughed up". Which colour is it?

I am very concerned to read this, she is only 13 and I really hope she will become better very soon. Without knowing any details I would suggest to continue in suctioning, and maybe order some  microbiological testing of mucus inbetween to see, if something else took place.

I am sure you are on the right way. It's not only hard for the ill person, but also for the relatives to take care and stand the suffering of a loved person. But in this case it seems as if there is not much to do than bear it. All of you.

What I do to avoid mucus (and I have also lots of it), is to avoid allergens, like dust, any allergic stuff, etc. Well, if somehow possible.  

Good luck to you and your nice...

gitta, Germany 

Postinfectious arthritis, CFSi, Asthmai, Hypertension">i, Zithi since 20th Sept 06 -  first 3/7 500 mg, since Nov 06 reduced to 3/7 250 mg. Doxyi since Nov 06 - 200 mg per day, NACi 600-1200 per day

gitta, Germany 

Postinfectious arthritis, CFSi, Asthmai, Hypertension">i, Zithi since 20th Sept 06 -  3/7 500 mg. Doxyi since Nov 06 - 200 mg per day, NACi 600-1200 per day

Mike- This is such a differrent case, I don't think any of us can do more than make guesses as to whether this is herx or not. Do keep us informed about her progress, because we will all learn from her experiences here.

CAPi for Chlamydia pneumonia since 11/04. 25yrs CFSi & FMSi- Currently: 150mg INHi, 300mg Rifampin, 200 Doxycycline, 500mg mwf Azithromycin, plus 500mg Tinidazole 2x/day pulses every two weeks. Whew! That's a lot! about 60% recovery. Ohio,

 

CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

There's a recent paper which makes an argument that Guillain-Barre syndrome, unlike other 'autoimmune diseasesi', is really and truly known to be an autoimmune disease: the precise mechanisms involved in its molecular mimicry have been traced:

http://www.direct-ms.org/pdf/MolecularMimicryOther/GillianBarrMolMimicry.pdf<

Reading the paper, I was struck by the similarities to what I'd imagined MS to be, when all I'd read about MS was that it was an immune attack on myelini: it attacks nerves all over the body simultaneously, and its onset is very quick.  (It never even crossed my mind that the attack of numbness I had, which affected only my feet and one leg, would be describable as MS, until a friend mentioned the possibility.  To me, the localized nature of the attack meant that infection was the probable cause.)  If it's Guillain-Barre syndrome, then recovery is normally spontaneous (if one does recover; lots of people die from it).  It's not out of the question that a subtle, long-term infection is involved somewhere in the course of the disease, but it doesn't seem like the prime driving force.

ALS is a very different phenomenon; its onset is much slower, and recovery is not normal.  I've heard of a case of recovery from ALS via treatment for chlamydia pneumoniae.

Mike,

 

Being a respiratory therapist I have seen many people on vents.  Just having the endotrachial tube in will cause mucus on its own beacuse it blocks our normal cilia from pushing it up and out (mucus).   But from what you say it is an enormous amount.  She must be on tpn, but keep her well hydrated. 

I took care of a young girl with myasthenis gravis who was being weaned off the ventilator.  She was soo scared she would stop breathing if she slept that we put her on a sleep apnea monitor.  Once she knew that she had "backup"  she got some severely needed rest and was able to leave the hospital. 

I have read something on this condition on the website of Healers who Share.  Give it a read,

kc

start doxyi/azith 10/05 Start tinii 1/06 switching to flagyli slowly since it seems to provide people with most physical improvement

dxi ms

dxi msi 1996. started capi 10/05. Started with tinii pulses switched to flagyli pulses. Now almost on continous 500mg flagyl but do need breaks. On minoi 100mg/day biaxin 1000mg day and NACi 600mg. ldni 2.0mg.

Thank you all for your responses. Our doctor has told us to use guaifenesen to help alleviate the massive amounts of mucous. We are aware that people who are vented need assistance with this sort of thing, but the amounts that we typically suction and change the trach. has increased 10-fold!!!  But, there is no color to the mucous, except an occasional red/blood when we shove the suction tube down a little too far or touch the side of her trachea.  She does have a feeding tube inserted, so we can and do feed her (much of it is the medications and vitaminsi/supplementsi and fluids) through the tube. 

 I have just found it strange that we had very little problems with Rocephini or ceftriaxone (Feb. - current) and the Levaquin (June-November).  After about 2 and 1/2 weeks on the Zithi., and then about 1 week into starting the Flagyli, this mucous production starts and her swallowing/speaking is disrupted. 

Since she began in the hospital in Feb., my free time has been consumed with researching.  I have read good and bad, but the majority of research says it's too early to call.  Some say it is good that she is young, because once she gets better, her body is still growing and can provide the resources available for producing new cells/structures.  She does have an identical twin sister, so we are looking into the possibility of a stem-cell transplant.

Many thanks.

Mike  (mikej2323@hotmail.com<)

Comment viewing options

Select your preferred way to display the comments and click "Save settings" to activate your changes.