Since about a year Nic has breathing-problems. Not allways, but when he has them, it is pretty scary for both of us. It doesn't matter if he is busy or not or if he is on abx. When he has this problems, he can breath, but it feels as if there comes no oxygen in his lungs.
A little update of his journey: Nic had an EM about 8 years ago. He was undiagnosed (less symptoms) for 5 years. Than he got the diagnose ALS (2 1/2 years ago). Got a positif bloodtest (ELISA I suppose) 1 year ago. Started treatment with improvement, but too short. Started again on treatment (by his physician, no LLMD's in the Netherlands) two months ago. Now he is on 500mg Zithro plus 500mg Doxy.
I hope you can help him (and me) with some advice.
Thanks & Greetings from the Netherlands,
Nic & Ingeborg
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It never was so dark, or it will be light again.
This can be so scary. I've posted about this before myself. Is the feeling like he can't get a deep breath? Before I give you the information below, just wanted to let you know this worked for me but I got checked out by a doctor (several times) to make sure I was actually getting enough oxygen. You can also do a search on air hunger because a lot of people seem to complain about this. My doc thinks this is caused by Babesia and is treating me for it along with Lyme. Here are some suggestions:
(This is from one of my other posts)
My osteopath doctor said that my diaphragm wasn't moving right, he gave me some exercises to try several times per day. It's hard to explain in writing, but bend your arms toward you in front, With your hands tucked under your chin slowly raise your arms up, out and around..Breath in while doing this. When you bring your arms down, breath out. Try this about 10 times a few times a day.
Next magnesium. This will help the muscles. Try an anti-inflammatory.
Heat can provide some benefit. Lastly, when it go really bad I went on some short-term Lorazapam. Not much, only twice a day worked for me. Also, taking Ambien worked too. I was so afraid I wouldn't wake up because of the breathing I had a hard time sleeping. Some times I'd wake up gasping, I still do that sometimes.
The docs theory is that the lyme/coinfection is hitting the muscles/nerves around my stomach/chest area, making me more aware of the breathing and making it harder to get the muscles to do what I want.
Here is a link to one of the posts that discusses air hunger:
http://flash.lymenet.org/ubb/Forum1/HTML/023779.html
Sometimes yawning helped for me too in the short term.
This must be very scary for both of you. I'm copying an article for you that may have some relevance. I'm sorry it doesn't say how to correct the problem. Hopefully ongoing treatment will have an affect.
Thoraco-abdominal manifestation of stage II Lyme neuroborreliosis
[Article in German]
Pfadenhauer K, Schonsteiner T, Stohr M.
Neurologische Klinik mit klinischer Neurophysiologie, Zentralklinikum Augsburg.
In the past little attention was paid to the thoracoabdominal manifestation of Lyme radiculoneuritis, because paralysis of the abdominal wall muscles was considered to be a very uncommon clinical manifestation of Lyme neuroborreliosis. In a group of 90 patients suffering from early stage Lyme neuroborreliosis we found abdominal wall weakness in 11 cases. In the majority of patients thoracoabdominal radiculoneuritis was located in the lower thoracic segments (Th 7-12) and involved more than 3 segments (62%) mostly bilaterally (69%). Abdominal wall paralysis was mostly bilateral (91%) and involved always the lower half of the abdominal wall. It was very severe in 18%. Electromyographic studies were done in the paraspinal and abdominal wall muscles showing fibrillation potentials and positive sharp waves in 86% and 50%, respectively. Diagnosis of thoracoabdominal radiculoneuritis in Lyme neuroborreliosis may be difficult and diagnostic errors may occur. Therefore we recommend to look carefully for paralysis of the abdominal wall, which can easily be overlooked on routine neurological examination. In patients from an area with a high incidence of Lyme disease it is recommended to exclude neuroborreliosis even in patients with known diabetes mellitus in order to avoid the misdiagnosis of diabetic thoracoabdominal radiculopathy. This has occured in 2 of our patients.
PMID: 9606679 [PubMed - indexed for MEDLINE]
Thank you for your replies.
Gopats: Babs isn't relevant in his story. This is the first Spring they found Babs by our Dutch dogs, so eight years ago, when Nic got his tick-bite, there was no Babs in the Netherlands. (I don't believe in doctors/ducks, but I do believe the vets in this).
I will give him your 'exercize' advice, I hope it will help him to get more air. The feeling is exactly what you describe, as if the air doesn't come to the bottem of his lungs.
He already takes Magnesium. He is affraid for the herx on it, but he pushed his Doxy intake up (from 400mg when started on Zithro till 500mg) because he 'missed' the herxing. He thinks he wouldn't get better when he doesn't herx. (I told him this is different for every Lymie).
Cave76: Nic had a overall check about three months ago. On the Co-trimoxazole his temperature became 41 degrees Celcius, so the were affraid that he had pneunomia. They made pictures of his lungs and a ECG, but everything was okay. His liver and kidneys were also good (three weeks ago) and he has the blood pressure of a twenty-years old (he is 54). So I think it's just the Lyme and the panic
Riversinger: Thanks for your reply even when it doesn't say how to correct the problem, it can explain it.
Greetings from the Netherlands,
Nic and Ingeborg
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It never was so dark, or it will be light again.
When I started on Zith I had the same problem...felt like I could breath okay but no air was going into my lungs.
I was very ill and my mother called an ambulance...the good thing was my blood oxygen level was fine and I had chest x-rays etc. done in hospital so in the end my doc decided it was a herx.
I have Babesia and I know air hunger can be symptomatic of this.
In fact all the hospital docs found was v. slight lung inflammation - a pleural rub on my left lung which they were not concerned about.
You should get Nic checked out by a doctor to be on the safe side & his blood oxygen level checked but it could be a herx.
BW
Emma
Just reading what you described and what Ingeborg described is what I feel right now. Air is going in and out fine, but I feel like I'm not getting oxygen.....
Are you being treated for Lyme?
Have you seen Dr Burrascano's guidelines http://www.ilads.org/burrascano_1102.htm he says to avoid caffeine if you have Lyme disease.
Chronic Lyme patients are deficient in Magnesium but this is not the reason for not being able to breath properly - it is because of the infections or co-infections like Babesia (or the intensification of symptoms during treatment with antibiotics).
Have you joined eurolyme - perhaps they could advise of the nearest Lyme literate doctor http://health.groups.yahoo.com/group/eurolyme
or offer advice.
Emma
W. x
Suki444: I shall print this all out for Nic (he doesn't have a computer) and give him the advice to let his blood checked. He never had to go to the hospital for this and I hope we can keep it that way. It started before he started treatment and I'm not sure if the abx made it more frequently or worser. He doesn't have the breathing problems every day and when he has them, they seems to go away pretty soon, but this is my observation. When he has them he most concentrate on his breathing and stop with everything else but he doesn't loose his conciousness.
Wrotek: It doesn't seem that the coffe has something to do with it for Nic, but maybe it still a good advice to drink less coffee. For the rest I understand the feeling of leave everything and totally concentrate on the breathing (that's how I see when Nic's has this problems).
wlf5286: Nic has paralysis on both feet, the feeling is okay, but he can't move them properly, they just hang down. His right hip is also paralysed. But I didn't realise this could have been something to do with each other. I hope it's gonna be okay (also for you).
Good luck everyone.
Greetings from the Netherlands,
Nic and Ingeborg
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It never was so dark, or it will be light again.
although Nic has some paralisis, i wouldn't expect that his air hunger is related to paralisis of the diaphragm. I suffer strong spasm of the diaphragm & there is a big difference between having that & feeling air hunger. Nic will know if he has these spasms. It is like a hic up but as the muscle tightens ( like when you hic ) it doesn't release.While the diaphragm is held tight in this spasm, it is impossible to breath in or out. The spasm holds tight until it gradually releases. This is what my PT gave me the heat pad for. To relax the muscle. My Neurologist has assured me that the spasms don't last long enough for me to suffocate although this doesn't make it any less frightening at the time. If Nic does get these spasms then he needs to be on some type of muscle relaxent ( like i am ) & he should talk to his Doctor about this problem. I think many people seems to get general air hunger without any apparent spasm. Just another strange symptom that TBD's like to throw at us.
Best wishes to Nic & yourself.
W. x
by the way, today he had no breathing problems, but like you should know as a Lymie, most symptoms are on and off.
Greetings from Holland,
Nic and Ingeborg
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It never was so dark, or it will be light again.
Yesterday afternoon Nic just told me he felt okay and than he started another herx (I just think it was one).
He felt better for a couple of days. Ectually since he started the Zithro (April, 22). He had more energy and a better feeling in his upperbody, only his legs are still getting weaker. And the last days he had no breathing problems.
Untill yesterday afternoon. He had breathing problems, cramps in his left foot, headache, etc. It can be the Mg. He doesn't like the Mg, because of the herx, but I push him to take it, but only when I'm there. I hope this will be better when he get used to it.
Greetings from the Netherlands,
Nic and Ingeborg