Any Lymies here ever had AIR HUNGER?

[Conniel7777]

I am convinced beyond all doubt I have Lyme and probably at least 1 co-infection, as all of my symptoms SCREAM Lyme. I will be seeing a LLMD w/ a very good reputation in December.

I also have limited sclero.

At my last Dr. visit w/ my AP doc, he asked me if I felt short of breath. I said no. ( I said no because I did NOT feel short of breath ) later, at the end of the appt, he said to me again “Are you SURE you arent short of breath?” again, I said “No.” that was the end of it.

After the visit, i began to ask myself “Why did he ask me that TWICE? is he EXPECTING me to be short of breath??” he had also mentioned during the visit that he thought I looked “Great” and was doing well….

Being a self confessed hypochondriac, as time went on, his comments began to bother me. Like many w/ sclero, I worry about PAH. ( pulmonary arterial hypertension )

Within a few days of the visit, i began to wonder if I really AM feeling short of breath.. let me explain…

For quite a while now.. a year or so.. I have noticed a small change in my breathing… not really “Short or Breath’, but something I cant put my finger on. for example, I may be sitting quietly, but yet feel the need to take a deeper than normal breath.

I can remember reading from people who have Lyme and co-infections about AIR HUNGER… I am now beginning to wonder is THIS is more what I have rather than actual “Shortness of breath”.

FYI: I went for a PFT test yesterday… as soon as we were done, the tech pulled out my results from last year and compared them to yesterdays results… ( last years results were completely normal ) according to her, the numbers were all just as good – or slightly beter- than last years except for 1: last year, on the Spirometry test, the past that says “PEF” was 121 last year.. this year was 100. I asked her what that meant.. she said something about it has to do w/ when you take the deep breath in, where the “top peak” of that deep breath is….

They will call me in a day or two with the results of when the pulmonary doc actually evaluates the test.

Anyway.. back to the “air hunger” question…

Listen.. Obviously, I dont want EITHER PAH or Air Hunger… but I know *something* is changing…

Has anyone here ever had “air hunger” associated w/ Lyme or its co-infections, or does anyone know anything about it? what does it feel like? can it resolve w/ treatment?

Yes.. I am worried–nothing new there– and I am also seeking advice from all of you, because although I know RBF doesnt dispense medical advice, I certianly think that many here know much more than most “experts”.

Any info / input on this subject would be greatly appreciated.

Thanks….

Connie

[Kim]

Hey Connie,

Yes, I had exactly what you’re talking about. I remember doing some gardening and not feeling (I thought) too badly, but I got “winded” so easily and this was springtime, not even hot outside. The flat-out total exhaustion and being out-of-commission for two days following any activity was another tip-off that I was in trouble. All of this eventually got better with Lyme treatment so I really think you’re on the right track in your thinking here.

Take care…..kim

[nspiker]

Hi Connie,

I have not experienced air hunger, but hear about it all the time with lyme. It is often associated with babesia. That might be why AP is not as effective for you, since babesia is a protozoa/parasite, and requires anti-malarial medication. I never responded to minocin alone, but definitely have improved with protozoa medications. That may be what you need.

That’s great you have an LLMD appointment, because they will know what symptom to treat, and what symptoms correspond with lyme and/or co-infections.

nancy

[Conniel7777]

Kim,

Hmm.. I am so glad to hear it eventually got better with treatment. I am sorry, if you wouldnt mind refreshing me, did you have a co-infection?

You know,its weird.. sometimes I feel more “Hungry for air” ( especially if I sit there and THINK about it ) even if I am just sitting quietly..and then other times, I can be up and doing things and dont really feel it, maybe because I am not paying any attention to it?

I simply cannot WAIT to start Lyme treatment.. I really feel like I am stalled with AP. I experienced big improvements, then the AP brought out some symptoms that I had never even had at all before I started AP.. and now it seems I am developing more symptoms, rather than continuing to improve. it has been a year and 3 months, and I am definitely stalled, and in some areas, worse. it will be nice to talk to a Dr. who REALLY believes that Lyme actually exists, that I am not crazy, and my symptoms are real.

Kim, thank you so much for your reply. it means so much to hear from someone like you that has walked this road before. I need to hear about the LIGHT at the end. 🙂

Connie

[Conniel7777]

Nancy,

I have no doubt you are right.. I am stalled when it comes to the AP effectiveness. it worked at first, but now I know for a fact,I need more.. there is something else going on.

Babesia.. I hear about that all the time.. Bartonella, too. but especially Babesia concerning air hunger. With the Babesia meds, how did that go for you? did the meds really “kick your butt”, od did you feel an improvement relatively quickly? were the meds for this hard on you? heck… you said you improved, and I guess thats the main thing, right? still.. so many questions..

I cannot WAIT for my Lyme appointment. I really need that affirmation of what I have been going thru, vs everyone else who rolls their eyes behind your back when you mention Lyme.

Thanks again for your reply, as well as any further insight you can offer…

[nord]

Yes, it is well-known, and can be rather severe from own and read experiences. At the most severe period during the summer, it was getting winded from just climbing stairs (10 ft elevation) or similar. Paired with considerable muscle weakness and general fatigue, it was a strange experience. I’ve had a few episodes after starting treatment a few months ago, but it constantly gets better. Over-enthusiastic aerobic activity is still a trigger (but yesterday I could ride a bike for 5 mi at a pace that felt “dangerous”, but without any air-hunger, and only minimal fatigue later in the day 😀 ).

My puffy fingers are also much improved 😉 (a little worse after the tini pulses, though). Definitely a part of Chlamydia-induced ReA (the LLMD thought it was from Lyme, but is it, or are there a lot of cases of undiagnosed Ch ReA?), but I think I’ve mentioned that.

Good that you’ll see an LLMD, hopefully aware of Cpn (commonly found in SD patients if I recall correctly from cpnhelp,). Having stalled at AP mino levels seems like a reason to consider to step up treatment.

[Kim]

@Conniel7777 wrote:

Kim,

Hmm.. I am so glad to hear it eventually got better with treatment. I am sorry, if you wouldnt mind refreshing me, did you have a co-infection?

You know,its weird.. sometimes I feel more “Hungry for air” ( especially if I sit there and THINK about it ) even if I am just sitting quietly..and then other times, I can be up and doing things and dont really feel it, maybe because I am not paying any attention to it?

I simply cannot WAIT to start Lyme treatment.. I really feel like I am stalled with AP. I experienced big improvements, then the AP brought out some symptoms that I had never even had at all before I started AP.. and now it seems I am developing more symptoms, rather than continuing to improve. it has been a year and 3 months, and I am definitely stalled, and in some areas, worse. it will be nice to talk to a Dr. who REALLY believes that Lyme actually exists, that I am not crazy, and my symptoms are real.

Kim, thank you so much for your reply. it means so much to hear from someone like you that has walked this road before. I need to hear about the LIGHT at the end. 🙂

Connie

Hey Connie, Yes, I was dx’d with Babesia and Bartonella along with Lyme………..good times! 😥 My story is not unlike yours, I had improvements on Mino/Zith and Clindy, but was still sick. Also like you, I just knew I had Lyme and insisted on Igenex testing (not easy when you live in the midwest where “we don’t have Lyme” 🙄 😈 😡 …….ugh!

[nspiker]

Connie wrote:

With the Babesia meds, how did that go for you? did the meds really “kick your butt”, od did you feel an improvement relatively quickly? were the meds for this hard on you? heck… you said you improved, and I guess thats the main thing, right? still.. so many questions..

I’m still treating babesia, and it’s been about a year since beginning treatment. I handled the babesia meds well, for the most part. You hear “horror stories”, but if you listen to your body, add only one thing at a time, and detox, detox, detox, you will do fine. I’ve heard Mepron is difficult to handle, did fine with it. Heard Lariam causes brain herxes, did fine with it. Heard tindamax will kick your derriere, and it never did.

I’ve improved about 70% from a year ago. It’s been slow and steady. You may not improve overnight, but hopefully will have significant improvement in the first few months. I’m sure December can’t get here fast enough…
nancy

[Conniel7777]

Kim,

Wow.. you have really had it ALL, havent you?

[Conniel7777]

Nord,

Thanks for sharing your experiences with me. I am not familiar with CPN, but thanks to your post, I looked it up and I WILL mention it to the LLMD.

I appreciate that info!

Connie

[Conniel7777]

Nancy,

It is good to know that you handled the meds well, as I do recall hearing some scary things. I like how you said do one thing at a time and detox A LOT.. sounds like excellent advice.

I will definitely pay back all of the help the members of this community have given me by posting my experiences with all of this, in the hopes it may help somebody else.. All of the help / advice and the experiences everyone is so willing to share with me goes SO FAR toward not only educating me, but also toward helping me cope with all of this emotionally.

THANKS, RBF!!!

Connie

[reesak]

Hi Connie – yes, I definitely have air hunger – like you said it is not really a shortness of breath, but just a need to take a deep breath and sometimes feeling like something is sitting on my chest – it also affects my voice which is hoarse a lot of the time. I have no problem exercising and feeling short of breath, it is mostly when I am sitting quietly.

ReesaK

[Conniel7777]

ReesaK,

Wow.. this is so weird.. you would think you would feel it the most during activity, not while sitting quietly, right? yet, thats when I notice it the most. and like you, I also feel a sensation in my chest, somewhat like someone is sitting there.. a tightness, a restriction..

Thank you for sharing your experience with me; its so hard to talk about these things w/ people who are not going thru it, and who may think its “all in your head”.

Connie

[Michele]

Hi Connie,

I had air hunger symptoms for several years. It was really the worst when I was on AP and also taking Plaquenil. Now I’m 10 months into a treatment with an LLMD who identified Babesia WA1. (Lariam, mebedenazole, albendazole, clarithromycin, parastat, GI6, are the major hitters I’ve been on for the past 10 months. The air hunger is rarely a symptom or a problem now. Rib cage pain was also a huge symptom for me. Now, it isn’t a major issue, but it’s still not completely gone. Unfortunately, the babesia is showing up strongly in my last blood test. The battle continues…
The best news is that I don’t hurt much anymore. 🙂 I sure hope that trend continues!!!

There are many strains of Babesia and it’s tough for the doc to guess the right strain. Just because a doc rules on one strain of babesia, doesn’t mean there isn’t another strain.

Michele

[Rosemary Perth Aust.]

Yes Connie. Mine was pretty severe. I had to sleep with a fan in my face for three years, was pretty cold in winter.
Also on a little oxygen through the day for this period as well . Eventually got over it with the treatment. It is a miracle I am alive for sure. They are options if you get really bad. We have to get a prescription here for the oxygen. You probably do as well.

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