This is topic Phrenic nerve/diaphragm paralysis in forum Medical Questions at LymeNet Flash.


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Posted by LymeCFIDSMCS (Member # 13573) on :
 
Has anyone has phrenic nerve issues or diaphragm paralysis with Lyme (or co's?). Apparently it can happen with both Lyme and babesia.

I'm in severe respiratory distress. Can't breathe. But can't go to the hospital as the hospital is what put me in this condition, since my MCS is so severe (and also my ME/CFIDS). I have not recovered and have been completely bedbound for almost 3 months from a visit to the hospital in Dec. But literally am losing ability to breathe. Also I have not been able to speak out loud in 8 weeks, not because I literally can't make sounds, but if I attempt to speak, I get so winded I have to go on oxygen for hours.

From what I've read my symptoms seem to fit with phrenic nerve damage from Lyme. I thought it was heart-related but the more I read I'm not sure, plus it feels like something is paralyzed, like I just can't get the breathing to happen.

If anyone has had this and successfully treated it, please let me know exactly what you did.

I know people will tell me it's a medical emergency and I should go to the hospital, but I really and truly can't.
 
Posted by bettyg (Member # 6147) on :
 
mcs, go to SUPPORT; can't remember who ... but look for ASPHIXIS/sp...is subject heading; read it. they have lost ability to talk also.


member geneal, a speech therapist, wrote down exercises to do to help your throad/voice. started working immediately for the member who posted! good luck!
 
Posted by seibertneurolyme (Member # 6416) on :
 
here is the link Betty was talking about.

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/78127

Can't remember if you have an LLMD or are treating yourself?

This sounds very serious. Please don't ignore this smptom.

This may seem like a stupid question -- are you having any type of muscle spasms or cramps etc in the diaphraghm area? Have you tried any type of muscle relaxant -- either prescription meds or herbal?

Have you tried rubbing something like tiger balm or icy hot on your chest. That is about all I can think of.

Hubby has had chest muscle spasms but nothing like what you are describing.

What about accupuncture? I think it might be worth a try.

Don't know if you have followed Alex's story or not. But she has been on a ventilator for several years from Lyme and Bart. Maybe try contacting her uncle Mike through the link below. They could probably tell you what tests you should have done.

http://www.caringbridge.org/visit/angelsforalex

Please keep posting so that we know you are ok.

Bea Seibert

Hubby wondered if glutathione through a nebulizer would be beneficial? He did this a few times and it seemed to shrink some of his pulmonary nodules.
 
Posted by LymeCFIDSMCS (Member # 13573) on :
 
thank you -- the thread you mentioned is a friend of mine so i'm familiar with it.

nebulized glutathione and muscle relaxants are good ideas -- thanks. i need a new scrip for the glutathione but i have a nebulizer.

i just did acupuncture!! my acupuncturist is lyme literate and knew about phrenic nerve damage, isn't that amazing? i will let you know if it helps -- going to do another treatment in a few days.

not really having muscle spasms, but the muscles feel paralyzed.

thank you!! i do have an LLMD.
 
Posted by swachsler (Member # 18155) on :
 
I really hope the acupuncture helps.

You know you're in my thoughts, as always.

Are there any diseases we have that glutathione is NOT good for?

Just in case you can't get an Rx for nebulized glut right away, you can buy (which is not as good, but second best), liquid - Essential GSH - from Dr. E's office.

Take care,
Sharon
 


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