I need to go into details here as I don't know if what I have is "normal" in lyme and I don't know what is going on. 3 months ago I started having difficulties breathing (which added to a whole load of toher lyme symptoms already well established).
What happens is I find it hard to open my rib cage to breath and when I exhale it's like my rib cage is in a hurry to close down again, like my respiratory muscles are failing (??). I spoke to a DR and he told me taht the command for respiratory muscles is located very high in the brain and it is very unlikely that the msucles would become paralysed also because I don't have any other sign of paralisys (though plenty of parasthesia coming and going).
Then at other times it's like the problem is in the lungs themselves,it's like the lungs are full of something already and the air can't really go in, I cough trying to expell something and there is nothing to expell or very little, no particular noise either. In such instances I am out of breath very easily, if I walk the dog I wonder if I will make it back...
Are these the symptoms people get when they complain of lyme air hunger?
thank you
Posts: 75 | From europe | Registered: Mar 2007
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
see, while i have not experienced the exact same thing, i had horrible air hunger. i literally would gasp for air and it was like my lungs just would not work. i would end up getting dizzy and out of breathe.
i felt like i couldn't get enough air and would end up panting, trying to breathe.
all tests came back normal. it lessend with treatment but i still have some residual symptoms.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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were you told what was causing it? I mean is it lyme or babesia or what?
thank you
Posts: 75 | From europe | Registered: Mar 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Could be Lyme could be Babs but COULD ALSO BE EHRLICHIOSIS- can cause lung problems!!!!!!!!! Talk to your MD!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Remember test for Ehr are VERY BAD so make sure you were treated for it-
And for Babs!! And for Lyme!! And for Bart!!! If still symptomatic!!!
Take care-
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
I talked to the dr which told me in different occasions that it is either stress (LOL) or they don't know. These are not llmd (as there are none in Europe striclty speaking).
I have done a general lung funcionality test taht came out really good and when they did listen to my lungs they heard nothing.
What worries me the most is this symptoms that seems to be down to respiratory muscles, I haven't really heard anybody with this yet on the forum
Posts: 75 | From europe | Registered: Mar 2007
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When I was diagnosed in July of 2005, after having lived with it for a long time, I reported to my llnp about my breathing difficulties.
It was as if I was forgetting to breathe. As if the breathing was depressed (different from depression) As if a knife was stuck in my lungs. As if the heart and lungs were twisted up inside me. And it is hard to breathe. Depressed chest and chest pains. Constriction of breath is how I often describe it.
She said it is a function of the hypothalamus gland.
After two years, I still have these same symptoms despite one year of antibiotics and another year of other methods.
So while I feel very much as if it is the lungs themselves, I'm thinking it could be more the central nervous system and the nerves and the brain itself.
I do not have Ehrlichiosis, but do have babs, bart and neurolyme plus a little mycoplasma.
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i have this only occasionally now, but for awhile it was absolutely terrible. i would wake up in the middle of the night, gasping for air and would have to try to sleep sitting up.
the doc i went to (and he is supposedly a llmd) testedme for co-infections but said i was negative for babs and erch, but i'm not believing that.
i was on biaxin for a short while, then ceftin, then amoxy. they they said "oh enough,you're cured, no more.."
so now i'm without a doctor again and symptoms are coming back full force -- only this time in my eyes.
this is so frustrating.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
Yes I have this going on now. Ive been in treatment for about a year. Tio me it seems to be worse then before I started treatment. It lasts for a week or two then I wont notice it for awhile and then it comes back. Dont know what it is but its scary.
posted
I have had this problem to the EXTREME in the past, and showed up in the ER many times.
I've no doubt one of these bugs is causing it. Most of my chest x-rays were normal, though I got lucky with one of them - COPD. How I could have COPD once and then a normal chest x-ray - who knows?
This symptom has gotten somewhat better with Ceftin, though not completely. I have noticed though that since I removed certain foods from my diet - milk, eggs, all grains, and avoidance of many high iron and high copper foods, the air hunger symptoms are kept at bay at least somewhat.
So what I'm saying is it is probably some neat little combination of infection and food allergies. By the way, my only blood-proven allergy was to eggs, but I will never touch milk or chocolate again. They make me evil.
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posted
I didn't do an x ray, I doubt it would show something, the problem is by the time I actually go the take tests, the symptom is gone only to come back later when I have normal tests results in my file, so no more tests warranted (arghhh), and this is unfortunalty true for ALL the tests I took.
Anyway, I am scared it might be a central nerovus system thing, if it was the hipotalamus, I would have probably signs of otehr hormones inbalances. I have had 2 intances when I woke up taking is a big gasp of air and I was dreaming that I was suffocating and I had to try and wake up (probably not a just a dream but reality), I haven't told the Dr about this, I doubot they would take it seriously
Posts: 75 | From europe | Registered: Mar 2007
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JimBoB
Unregistered
posted
Remember, "The Squeaky Wheel Gets The Oil".
northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
Many people mention babs causing "air hunger". But then, that has to be described.
I like the "forgetting to inhale" description, but do not know if that is what "air hunger" means.
I also notice the constriction around the sternum.
The hypothalamus is one area I have read about. There was an article the other day about investigating sudden infant death syndrome, and hypothalamus development. Of course, I forget where I saw it....
Another possibility is vagus nerve which seems to affect everything! The diphragm on the inhale pulls down to pull air into the lungs. Then goes up to push air out.
Hopefully treatment will alleviate your symptoms. It is frightening when this happens, as I almost black out.
Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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posted
It's the bugs affecting the autonomic nervous system through the brain stem or the vagus nerve. Probably babs. I had all those symptoms and most of them are much less now after 6 months of mepron/zith and one year of bicillin. It is so scary. It brings back really bad memories.
Posts: 293 | From healdsburg, ca , sonoma | Registered: Feb 2005
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I wonder what would happen without treatment, (which is a really big question for me because I have trouble tolerating it so I have to start and stop and try different things). Would I die? Can you just die like this because you stop breathing? If this is a symptom that the automonic system is affected I guess it is really bad, I prefer the vagus nerve hipothesis (like I can choose)...
Posts: 75 | From europe | Registered: Mar 2007
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One of the things my first lyme pracitioner said to me and my partner is that
YES, it REALLY FEELS LIKE YOU ARE GOING TO DIE.
In essence, she validated the experience of feeling like you will die.
For all the many reasons.
I may be straying off topic a little and am not sure my respiratory symptoms fit the "air hunger" thing, but they are still respiratory symptoms, likely from babs.
But I am hearing your question very loudly about treatment.
Because I am in the same boat with this same question.
I have the hardest time tolerating it and since it makes me feel WORSE coupled with the brainwash from the ducks about how what I have doesn't exist plus the long term antibiotics are not good....and it's just permanent damage.
Has me in question about what to do.
I did mepron/zith for about 3 months and I have to admit, I was skeptical from the start with everything. I literally felt like the treatment was going to kill me it inflamed my heart so much I couldn't make it from one room to the next.
Anyway.........
I don't know if gone untreated you could die.
I don't know if this is an aspect that if gone untreated could mutate to ALS or some such thing.
Having lyme and coinfections is probably one of the hardest places to be today because of all the confusion and discrimination.
Most people here will tell you to stick with it and get treated with antibiotics.
Most commonly people who die from lyme do so via suicide or heart block. However, it is plausible to say that gone untreated, it morphs into other things that might close a body down slowly.
It takes a kind of ENDURANCE I've never imagined could be requested from a human being.
I have spent to much energy enduring and not enough on looking for solutions, though my intolerance thing to treatment is very tough to deal with.
Thank you for the info concerning how people die from lyme, it's a bit reassuring because they are not my case (as for now!)
I know it is very difficult to swallow all those many drugs with all large consensus of Drs saying it's crazy and you shouldn't do it, but so many people have been taking these drugs for years with no consequences. The 2nd line of tratment for tbc is 18 months of very heavy abx, no drs would tell you that it is crazy to get that kind of tratment if you have tbc, it's just that they don't know lyme and think the treatment is disproportionate compared to the disease
love
Posts: 75 | From europe | Registered: Mar 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear Seewater,
This is one of my worst symptoms.
I feel as if I am constantly striving to get a full breath of air.
I breathe just fine lying down at night.
No struggling to get that good breath in.
I've been to the ER and found my pulsox was 99.
No, they said, you are breathing just fine.
I did 3 months of malarone/zithromax/bactrim ds to have symptoms get much better.
Then ten days after I started rifampin for bart, they came roaring back.
Headaches, TMJ, pain in teeth, air hunger, imbalance, etc.
I am back on malarone/biaxin this time.
It is scary as I herx for babs I get an increase in all of these symptoms,
Especially the feeling of not getting a "good" breath.
I yawn all day long. Sometimes, during a yawn I get a full deep satisfying breath.
I may not get another one for some time after that.
Of all of my symptoms, this is the worst!
I had a pulmonary function test done....did fine.
Had nuclear stress test done.....heart is perfect.
Had doppler echo cardiogram done to rule out pulmonary hypertension.....It's not that.
For me, it is babs.
I really hate this bug.
Hang in there. I am gasping along with you.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Yes, I tend to isolate when things get bad and that never helps anything.
Well, for several years I endured what I did not know I was suffering from just thought I must be going insane. Even though I have had the dormancy and waxing and waning since I was 10, at the turn of this century the progression slowly became less easy to live with until it became a cocophany.
And I lived in that for years before diagnosis. It is really beyond the ability to express in words. Insanity is like that!
Although I do want to write a book yet I still have trouble comprehending and reading so who I once was has been completely stripped from me and all I want now is to get my life back.
I must say, I have made tremendous improvements although with all the controversy and extremism, I still do not know exactly how much the antibiotics played into the help. I do know they definitely played a part.
I am a long way from where I want to be.
I am trying very hard not to isolate myself when it gets bad. That's the most important thing.
So, still....I must make a decision soon enough about whether to go back on antibiotics and which ones (with the guidance of my dr) and am still not sure how to proceed due to the fear of the antibiotics and how terrible I feel and how confusing it is with more docs than not telling how it is not beneficial after a given point.
I've always been a mediator kind of person so seeing both sides may be getting in my way as much it is helping to balance.
I do know that some of the detox I've been doing with my dr. are helping tremendously and some of the other stuff, like the heparin is really helping.
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