posted
I read Ingeborg's post on air hunger quite late on. I posted a question with my coment but incase it isn't seen i thought i'd ask on a new topic.
I suffer regular spasm of the diaphragm for which i take a muscle relaxent. My PT gave me a heat pad to use to relax the diaphragm & i use this regularly. I find that my air hunger & spasms seem to be worse at night & sometimes i wake out of a deep sleep, gasping for air. My question was this. Does anybody who has air hunger & or daphragm spasm, use oxygen & if so, does it help?
I know that there are various theories as to why TBD sufferers get air hunger but it's difficult to ask for oxygen if there are no tests & results to back up your request. I am at least lucky that my neurologist has observed my diaphragm spasms but as he has assured me that they don't last long enough for me to suffocate, i don't think he feels that it needs anymore treatment other than what i have now.
Best wishes, W.
Posts: 57 | From England | Registered: Jan 2004
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lla2
Frequent Contributor (1K+ posts)
Member # 2364
posted
this is very common with babesia the coinfection of lyme . have you ever been treatd for it, or does your lllmd know about it. it's hard to test positive for it. I've tested negative about 10 times for it, but after treatment this night time waking gasping for air finally went away...
ask your llmd about it...and see if you might have any other symtoms of babs you might be overlooking..do a search on here...
Lisa
Posts: 4713 | From saunderstown, ri Usa | Registered: Apr 2002
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minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
Hi there. I noticed you're in the UK -- do you have an MD who's experienced in Lyme?
I looked through your other posts, and I'm not sure if you got all the intro links. So here are some, starting with coinfection info.
Air hunger sucks royally, and I'm a little shocked that your doc thinks everything's OK since you "won't suffocate."
An LD friend of mine with air hunger ended up using one of those air-forcing thingies when she slept -- wasn't oxygen, but simply forced air up her nose -- and got great relief from it. Not being able to sleep properly causes SEVERE immune system impairment and needs to be dealt with.
Magnesium deficiency is often implicated in muscle spasms. You can try taking Mg orally; for some people, IM shots work wonderfully well.
Here are the links, and I hope this isn't redundant:
There's also a Eurolyme group that might be useful to you in finding a LLMD near you.
For more muscle spasm info you can search on fasiculation and myoclonus. In one of the myoclonus posts someone says "On a bad night this can keep me awake all night happening over and over again. I also get a feeling similar to the 'jack knife' you described. It feels as though someone has punched me in the stmoach and all my air is forced out as my whole body contracts into my belly area." Is this what you experience? anyway, it's at http://flash.lymenet.org/ubb/Forum1/HTML/015124.html
posted
I wonder if taking lorazepam or something that calms nerve impulses down would help also.
I always felt I wasn't getting enough air. They gave me oxygen in the hospital and it didn't help. My oxygen levels were fine. They even tried nebulizer treatments. A combination of the exercises I described before, meds, and herbs has helped me with this a great deal.
You might find even more topics if you use the terms "shortness of breath" as search terms. The search function is located up at the top of the page in very small print, right below where it says "Post Reply".
The advantage of doing your own search is that you'll probably find lots of unexpected nuggets of information in the process which have already been posted. It's much faster than waiting and hoping that the right folks will be on-line to notice your topic and reply, before it gets lost at the bottom of the heap or else pushed to another page of other lost topics further down.
posted
Sorry to be late with a reply, Guys! I've been laid low with a good dose of vertigo.
Lisa, i was diagnosed with Lyme & Ehrlichia in 1993. It's such a long story but the only coinfection treatment i have had, as such was Doxy that was used in the treatment of the Borrelia. I suspect that i have Babs, Bart & Ehrlichia still as i contracted this from multiple bites while working with Hooved animals. I am planning to come over to the US as soon as funds allow me because my treatment ( or lack of it ) has been a joke. Thanks for your input.
Minoucat. I no longer have an LLMD. I was treated by infectious diseases but after lots of IV, over a period of years, i became paralised. I was then handed over to a neurologist & that is where my care remains. Magnisium is something i already have to take as i am very deficient. I have had spasms for the last few years but much more in the last year. The person who said that it can keep you up all night was right. It is like a punch in the stomach but as i described to Ingeborg, i liken it to a hicup, where you hic in & then stop, unable to breath in or out. Very scary! I think my neurologist is having to treat the things taht threaten my life rather than the ones that frighten me or cause me discomfort, still unfair though. Thank you so much for the links.
Gopats, I was very interested that you had had oxygen & nebulisers etc with no relief. My oxygen sats were ok last time i had them checked but still i feel like i will suffocate when i get these bouts. Sometimes i just have to lie there taking deep slow breaths but the urge to breath fast is overwhelming.
TX Lyme Mom.
Thanks also for your information. It is naughty of me, i know, not to do a search. I did read the topic about searching. The problem for me & i maybe speak for others is that i get so confused that if it doesn't all go smoothly, i get in such a mess. The other problem is that my vision is badly affected. I cannot alter the way Lymenet is displayed so anything i need to read, i cut & paste into my email folder where it is converted to the colours & fonts taht i can read. Sometimes it is jsut so much easier to ask & hope for a reply. I have been a member of Euroyme for quite a while. I unsubd from both Eurolyme & lymenet for a while because it all got too much for me but eventually the need to be with other Lymies, over ruled! I'm sorry if you old hands get frustrated with us newbies now & then but i think our capabilities are so varied that sometimes the easy route is the only one that some of us can take. Forgive me all! XXX
Posts: 57 | From England | Registered: Jan 2004
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posted
My air hunger symptom went away for me after about a month of treatment for babesia. I am using the Mepron/Zythro combo has been very effective.
I should also say that I was bleeding oxygen through the BiPap machine at night this helped. Since my babesia symptoms have subsided, my sleep apnea has gone away. I have not used the Bipap for the last two months.
[This message has been edited by hwlatin (edited 05 May 2004).]
Posts: 533 | From Las Vegas, NV | Registered: Jun 2003
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posted
wlf52856- Do you get any relief if you concentrate on yawning? I did the same thing you did just lie there trying to concentrate on breathing, like my system would forget how to breathe. I did heat too.
I get small bouts of this now. I've used Hops recently (drops) and drink it in hot water, helps a little. Heat helps some. I wonder if hot bath would loosen up those muscles.
It may be unpopular but I'd go for the drugs, ask the doc about something to relieve tension in those muscles. Like I said the lorazepam took the edge off for me.
The other thing, when I was at my worst, my b12 levels were much too low.
I am convinced that quite a few of my symptoms are more to do with Babesia than Borrelia. I suffer severe abdominal pain too which i have heard is common with Babs. I only have a diagnosis of Ehrlichia but that was back in 1993. I am due to see a LLMD here in England next week. I'm getting a microscopy done & hopefully a test for coinfections. I will be very surprised if i don't have Babs. I hope that if i can get the correct treatment, that i might have an esier time. I have been in a wheelchair for three years but i have to say, that is one of the least life altering symptoms. I was, naturally devestatede when i lost the use of my legs, but if i could get well, i could maybe work. Plenty of people are in wheelchairs but lead a normal & full life. With all the other symptoms in addition to being paralised, i'm lucky if i can do anything for myself!
Gopats,
Yawning? can't say that i have noticed but then, i haven't tried yawning during a spasm. I will give it a go. As well as heat pads, i use a facial sauna which i spend a good 10 mins breathing in the steam. This really does help ease things but as i said, my most frequent spasms are during the night.
This Lorazepam, i will mention to my Doctor. Like i said, i am already on a muscle relaxent but although it helps, it doesn't stop the spasms. I don't just get the spasms in my diaphragm, i get them in most of my muscles except bellow my waist as they are completely flacid now. I had a period of my suffering spasticity in my muscles but then they relaxed. I cannot feel or move anything below the waist now. sometimes it is a blessing really as only half of me hurts now!
Thanks for your responses. I do keep checking out Lymenet but i'm limited now because of my eyes.
Best wishes, Wendy. x
Posts: 57 | From England | Registered: Jan 2004
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