Topic: Who else has Lyme induced breathing issues?
BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
I don't mean Babesia, I mean from Lyme. I believe mine is a nerve issue causing my vocal chords to move abnormally
I had a test done by a ENT and they put a camera thru my nose into my throat.
My vocal folds were not working properly, causing me not to breath well.
Originally thought Babs, but been on Mepron for almost 2 months with ZERO reaction.
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
| IP: Logged |
posted
I saw your other recent post about this, and wonder if it could explain some of the breathing issues Lyme people may have (and I do too).
Although looking at the 'cure' for it doesn't seem as easy as one would hope. There isn't medication for it, but instead therapy or surgery (if bad enough)? What treatment does your ENT recommend?
I also wonder if it is in fact caused by Lyme nerve damage, wouldn't treating Lyme improve symptoms? Unless it's a damage-done, type of thing? Other causes could be GERD (both for breathing and vocal chord dysfunction), which I suppose is easy enough to test by doing a trial of meds.
Posts: 584 | From NY | Registered: Feb 2009
| IP: Logged |
BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
Doc said I have mild acid reflux. I'm on prilosec now.
He recommended speech therapy to learn breathing techniques. But if it is a nerve issue, not sure how that would help.
Lyme treatment never helped my nerves in my arms and legs so I don't know.
If it is a damage-done type of thing, I may have to kill myself because I can't live with this suffocation forever
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
| IP: Logged |
posted
Please post back if the speech therapy helps. If nerve related... yeah... not sure what would help then... perhaps Lyrica?
My symptoms are somewhat similar to yours, although I did have some response to Mepron. But I'm not sure if it was a side effect or from killing Babesia. I had a small initial improvement in breathing from Mepron, but that conked out after about 2 weeks.
Nexium didn't really help my breathing, besides perhaps decreasing acidity in my stomach a little. But I think that was primarily from the antibiotics I was taking.
I'll also assume you have tried inhalers, and they didn't work.
Just read an article about vocal chord dysfunction that states:
In one study, almost all people followed with a diagnosis of VCD had complete disappearance of their symptoms with a five-year time frame, with many of these people having symptoms for a total of 6 months or less.
How long have you had breathing problems? Mine has lasted a little over 5 years...
Posts: 584 | From NY | Registered: Feb 2009
| IP: Logged |
BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
Tt's been 4 miserable months for me and it is pretty severe.
Inhalers never helped. My lungs are perfect and I don't have asthma.
I guess those people who got better got better because theirs was caused by stress or gerd etc..
But with Lyme, it may not improve until the Lyme improves. If that every happens!!!!
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
| IP: Logged |
posted
I've been dealing with increasing breathing/air hunger issues that LLMD thinks is babesia, but I just don't know.
I'm freaking out this morning because I feel llike I could just keel over at any time, like something is spasming and making it hard to breathe.
Posts: 303 | From Pennsylvania | Registered: Jul 2010
| IP: Logged |
BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
Starfall: Have you been to a ENT that can check your larynx and vocal folds?
From what I've heard, Babesia causes shortness of breath because it infects red blood cells which carry oxygen.
In my case, I actually have documented abnormalities with my vocal folds. They close up when I try to breath. This can be caused by a nerve issue or other things.
I really think all Lyme patients with breathing issues should get checked.
I'm on Babesia treatment right now and starting to think it's pointless. I have no symptoms of it and never have (until the shortness of breath but now I know there is something happening in my throat)
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
| IP: Logged |
posted
The best helping thing for this breathing problem is weight lifting.And you will fill better as you lift weights.Yes it is lyme , babs or bart infection or all.
Posts: 482 | From Nebraska | Registered: Feb 2010
| IP: Logged |
BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
My lungs are clear too...my oxygen levels in my blood are also normal...yet, 24/7 I feel like I can't take a satisfying breath.
If it is nerve related, I hope it is not permanent damage. This is what scares me the most. I can't live with this feeling forever
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
| IP: Logged |
Razzle
Frequent Contributor (1K+ posts)
Member # 30398
If I were you, I'd go with the speech therapy - there are breathing techniques that can improve the "suffocating" sensation from VCD.
Nexium, Prilosec, etc. only treat acid, they DO NOT treat reflux. So reflux can still be happening, it just won't give you Barrett's (pre-cancerous esophgeal tissue changes). DGL can actually strengthen the lower esophageal sphincter so that the REFLUX stops.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
| IP: Logged |
posted
PLEASE!!! did anyone ever find relief from this?? I have this throat thing its 24 hrs a day feel like my voacal cords dont open when I breath. I was in remission from Lyme and Co, last year i got mold poisoning. I have the hla gene for mold not lyme and during this this throat thing started its horrific! I have been treated for the mold and all symptoms are gone but for this. I believe from reading its actually vagus nerve neuropathy. I am not thinking its lyme or bart causing it but this is my only symptom. I have also read vagal nerve neuropathy can be due to post viral issues usually herpes zoster infection. If anyone has found relif from this please post. I cant live like this and I have tried everything there is. I do not suffer reflux, my diet is clean no sugar no dairy no processed foods etc. I detox in a infrared sauna everyday etc nothing touches it, so scared its permenant damage. But I got rid of innapropriate sinus tachycardia from bart after having that for over a year im hoping this to can heal!
Posts: 229 | From front royal, VA | Registered: Jun 2008
| IP: Logged |
posted
PLEASE!!! did anyone ever find relief from this?? I have this throat thing its 24 hrs a day feel like my voacal cords dont open when I breath. I was in remission from Lyme and Co, last year i got mold poisoning. I have the hla gene for mold not lyme and during this this throat thing started its horrific! I have been treated for the mold and all symptoms are gone but for this. I believe from reading its actually vagus nerve neuropathy. I am not thinking its lyme or bart causing it but this is my only symptom. I have also read vagal nerve neuropathy can be due to post viral issues usually herpes zoster infection. If anyone has found relif from this please post. I cant live like this and I have tried everything there is. I do not suffer reflux, my diet is clean no sugar no dairy no processed foods etc. I detox in a infrared sauna everyday etc nothing touches it, so scared its permenant damage. But I got rid of innapropriate sinus tachycardia from bart after having that for over a year im hoping this to can heal!
Posts: 229 | From front royal, VA | Registered: Jun 2008
| IP: Logged |
17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
Might Chlamydia Pneumoniae be a consideration?
My cousin has lyme and bart and CPN which gives her terrible breathing problems. I don't know if it's the same as what's being described.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
| IP: Logged |
posted
I dont think so, this is in the throat and not the lungs thats the wierd thing about it ur out of breath but lungs and oxygen are fine!
Posts: 229 | From front royal, VA | Registered: Jun 2008
| IP: Logged |
17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
Oh, OK. Very sorry for all who have to deal with this.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
| IP: Logged |
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I use to suffer bad with feeling like my throat was closing up. I suffered with this for several years and it finally improved. Now however, my vocal cords don't feel right.
Sometimes I can barely talk. Its like my voice is very weak, and I get a slight feeling like my throat is closing up. Although not nearly as severe as it use to be.
I wonder if this is similar to what you have? I think for me anyway, that it is caused by Lyme because it has improved with lyme treatment.
Posts: 4035 | From Mississippi | Registered: Jul 2008
| IP: Logged |
BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
sutherngrl: yes this is the sensation I get too..like my throat is closing so I can't get air in
glad to hear it improved!!
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
| IP: Logged |
posted
Have any of you had cortisol levels checked? I have had the air hunger thing and it is not pleasant for sure.
If I were a betting man (I'm not) I would guess that the breathing has something to doing with cortisol and adrenals/thyroid.
Think about it, what are the symptoms that you get when you are nervous? The feeling you get when you get really scared. You get the lump in your throat and it is difficult to take a deep breath.
It's funny a few hours ago, I felt like this. I had all the symptoms and I even feel like something it crawling around inside. I took a couple cortisol calms and in under 10 minutes was much better.
Does this make sense or am I way off?
-------------------- IgM- 31,34,39,83-93 IND IgM- 41+
IgG- 31,34,39,83-93 IND IgG- 41++ Posts: 610 | From Lymeville | Registered: Nov 2010
| IP: Logged |
Also get the weakened voice especially during treatment -- I have it to the point where it takes too much effort to talk, and don't feel compelled to talk (which is often NOT the case as a rule!)
I get jaw pain at times too. I suspect it may be Lyme related -- some if not all of it.
When the breathing thing gets bad enough for me, I get out my Rescue Remedy drops (Bach Flower) -- you can get them at any healthfood store, or order them online.
I then put several drops on my finger tips and then apply to the entire throat and neck region wherever I am having the most concentrated discomfort (for me it is in that notch part in the center part of the neck)
Although not always 100% effective, it almost always does the trick for me.
If you go this route, I strongly suggest that you also take the remedy internally, too.
Of anything it has helped me the most.
Good luck Robbie
Posts: 192 | From New England | Registered: May 2011
| IP: Logged |
Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
I always had breathing issues when babesia was long gone.
I never had asthma, nor bronchitis, my lungs and bronchial tubes were the best part of my body before lyme!
I DO think I had problems of toxins building up there. My naturopath found lead in my lungs and we did chelation. I do think I herxed in the lungs or in that region, causing me breathing problems.
Taking right cleansers helped me many times out.
when lyme got dormant, never more I had the issue. Not a single time!! It was not babesia.
Posts: 6199 | From Brussels | Registered: Oct 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic