posted
I have a question about air hunger. When I first got babesia, I had what seemed to be "classic" babesia air hunger -- I would just suddenly be gasping for breath, couldn't catch my breath, etc.
Now, 3.5 years into Lyme and babs (and longer for bartonella, I just am chronically unable to take a deep breath. Any time I pay attention to my breath, it is just shallow all the time. It's different than it was pre-babesia, but it's also different from that classic air hunger of suddenly gasping.
So what is this? Is this still air hunger? It's annoying, and unless I consciously focus on trying to breathe deeper and FORCE air deeper into my body, I just do this shallow breathing and it's like my lungs just won't expand on their own.
I use supplemental oxygen in part just because it is so hard to push air into my lungs all the time like this, and if I don't, I never seem to get enough oxygen due to my bad breathing. I never had this before Lyme and co's.
For the record, I was only able to tolerate a brief course of Mepron, and I have babesia duncani not microti. I have had to use herbs for my babesia treatment for the most part (Quina and Artemesia) since I can't do Mepron. I have used meds for Lyme and bart though.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
I have read of people trying mepron a 2nd time and it is easier.
With my daugher the fatigue was so intense we didn't recognize the "air hunger".
At her 1st visit to the LLMD he had her hop to the end of his office and back. No more than 20'.
She didn't make it 10' without gasping for breath. This is how we identifed her air hunger.
Hope this helps.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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nefferdun
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posted
That sounds like the air hunger I had. It is very upsetting. I felt like I needed more oxygen and tried yawning or gasping for a deep breath. I would throw my arms up and lean backwards, trying everything I could to expand my lungs. When I did finally get that deep breath I literally thanked God. I would even hold it for a few second just to feel satisfied.
Later on, as I got better, I did not have trouble expanding my lungs to get a deep breath. Just bringing this to mind, as I am writing this, I am taking deep breaths.
I know someone who was told they were hyperventilating and to breath into a bag. It is not hyperventilating. The bag does not help at all.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
Thanks to both of you -- that's helpful. Nefferdum, how much treatment (and what) did you do for babs before you stopped having that symptom? Do you remember? What you describe is definitely very similar!
And Tim, I'm curious if your daughter would only have the air hunger with exertion? I guess that's what you're saying but did other exertion bring it on too?
Posts: 929 | From Massachusetts | Registered: Oct 2007
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posted
I, too, have Babs (microti), and have struggled for a long time with air hunger.
My air hunger typically presented itself as a severe inability to draw in a complete breath. I know full well the tricks and trades of trying to help my body with that process...be it with the yawns, the quick breathing to then force that little extended breath at the end, sitting on top (well, right next to) either a HEPA filter, fan, or humdifier to use the air/moisture as my unique source of oxygen.
On top of this sensation, my air hunger would also get worse with any amount of physical exertion, or a bad viral infection (cold) or upper respiratory illness.
To add to the air hunger issues, I've also dealt with vocal cord nodules (and edema of the vocal cords), inflammation of the thyroid (thyroiditis), problems with tachycardia that interfere with breathing, and severe allergies that pose problems in my throat/windpipe.
I have visited ER's due to the breathing issues...and of course, have left many a medical staff quite perplexed.
I am happy to report that although I am not able to yet tolerate a decent-sized dose of Mepron at this point, the time that I have been on it (now about 6 months) has made a HUGE difference with the Babs-driven air hunger. I dare say that I can actually take in a deep breath whenever I want (well, for the most part- air hunger will still flare with Herx's, etc.).
Just to be aware, I too, was once told by a physician that I was hyperventilating while in his office explaining a different set of symptoms to him. That jerk said some pretty awful things to me... But, he's the dumb#@@ who noted my positive Lyme titer and didn't make any connection with Lyme and other tick-borne diseases. So, although this symptom (and my 40+ others) is certainly not funny, it's I who got the last laugh from that particular situation. I'm the one who still gets the satisfaction of knowing that this bozo couldn't identify true compromised breathing from hyperventilation. How's that medical school loan working out for him, I wonder? What an idiot.
Can you PM me about your treatment and who you see for a doctor (you can use initials)? I am also in MA.
Thanks so much!
Posts: 315 | From Negative (-) to positive (+) | Registered: Nov 2011
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Rivendell
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posted
After my first tick bite and Lyme diagnosis, I started waking up unable to breath at all. Could not inhale any air at all, then gradually the air would return. Then this started ocurring in the daytime as well.
I have been on inhalers ever since with a diagnosis of asthma. Could this actually be Babs?
(After my initial bite, I received two or three weeks of an antibiotic and sent on my way. Went down hill until diagnosed with CFS many years later. I now know more about Lyme and know it was Lyme all along.) I am now seeing a LLMD.
I always wondered what air hunger was. Does my symptom sound like Babs? Thanks
Posts: 1358 | From Midwest | Registered: Apr 2009
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I, too, was placed on inhalers. Flovent, Albuterol, Advair (both the Diskus and the inhalant form). But- when my air hunger issues got so bad, the inhalers did squat. That's when my husband had to call the EMT's and I was given oxygen and more albuterol en route to the ER.
You make a good point. Air hunger is oftentimes very challenging in the evenings...especially when lying down.
As I mentioned, with nodules on my vocal cords and additional allergies, I would wheeze and have the strangest sounds coming from my chest and upper windpipe. It has been a frightening past to say the least. Nowadays, the HEPA filter in our bedroom is on my side of the bed. When I feel that my breathing is compromised, I'll aim the filter right at my face/mouth. It has really helped me, let me tell you.
I absolutely think that what you are describing could be driven by Babs. The problem with a stealth (and long-standing infection with Babs), is that some people only exhibit one or two of the classic symptoms of the disease.
I might recommend that you look into Schaller's books on Babesiosis. I bought both books second-hand (still very expensive), and they are a great resource/reference to have. It would not hurt if you requested a test for Babs (be sure to be tested for the different strains of it as well).
Oh, one more thing that I might add- my air hunger also improved once I was placed on Singulair. It has definitely enhanced my lung function! Posts: 315 | From Negative (-) to positive (+) | Registered: Nov 2011
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
Thanks for the info. The book sounds good.
My LLMD has me on Plaquinil (sp?) combined with other antibiotics. I think the purpose of this combination is to bust cysts while killing Lyme, but I noticed that the Plaquinil is also used in treating malaria, so hopefully it will help if I have Babs.
I will also ask the LLMD about my symptoms.
Thanks. Glad to know that Singulair helps.
Posts: 1358 | From Midwest | Registered: Apr 2009
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I tried to PM you back, but it appears that your mailbox is full. I'm glad that you could appreciate the dumb@%% doctor reference.
When your mailbox is available, I will be sure to share with you my trials/tribulations with Mepron. It looks like we actually share the same diagnosis, and also have seen the same LLMD.
Posts: 315 | From Negative (-) to positive (+) | Registered: Nov 2011
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