posted
I was hoping someone here can give me some support and also some tips. I have been having ongoing lung symptoms since a year ago. It began exactly a year ago-- I felt like I could not exhale deeply enough, 10% of my lung capacity dimished.
six months later It was more like 25% of my lung capacity to exhale dimished. My lungs were not elastic enough to contract and allow the air to push through.
I did a chest Xray which was normal.
Then Four months later It worsened again to about 35% my lung capacity. I did another chest X ray which again was normal
Now four months later I am over 50%. I can't exhale!!! I try with much force but my lungs are not elastic at all.
I did a search and my symptoms mimic emphysema , but I am only 19 years old and have never smoked.
I don't understand what is happening. I am scared and dizzy from the lack of oxygen and this condition keeps on worsening.
I used to get "Air Hunger" but this is not air hunger . With air hunger my lungs would not open and I would have to Yawn to get relief.
But with this, my lungs open and I can inhale, but I can't exhale or push my air out.
Can someone help me please??
I am taking my mom's asthma meds but they don't help/
I have a deep wheez and a hollow sound in my chest. My doc here thinks it is insignificant, But It is SIGNIFICANT as I can't breath!!!!
Has anyone ever had this??
It is the opposite of aIR hunger, you can't push your air out.......It's more like releasing your air hunger or pushing your breath out hunger.
Yes it is pushing your air out hunger-- that is what it exactly is!
Any input Pleazze!!! It gets worse every four months.
And every time I catch a cold it makes it a million times worse.
I do tea tree oil steam inhalations which help a bit but not much.
Are there any therapies/ exercises/ vitmains and herbs for lungs??
Anything that can make them more elastic so that way they can contract and recoil??
It consumes most of my energy for the day and my activity is limited.
posted
Lynn, could be sarcoidosis instead of lyme since your lungs are so affected. you can read more at www.marshallprotocol.com.
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Hi Lynn,
Sorry to hear about your lung/breathing problems. I developed asthma as an adult after my lyme-contracting tick bite, so I know how you feel.
Most of us here are not doctors, so we can only give you our advice and support -- which is necessary and helps, but is no substitute for what you need here -- a visit to a respiratory doctor! Sorry, I know well how expensive doctor visits are, but your lung issues sound serious and you need to see a respiratory specialist -- as well as checking in here for advice and support.
I do not need currently the daily asthma inhalers, but I feel better carrying around my emergency inhaler and use that as needed. Also, surprisingly (at least it was not expected), my asthma issues are improving slightly with abx for lyme.
Ginger helps, and all the Traditional Medicinal brand of Breathe Easy teas help. Changing my diet has been a huge help with breathing issues -- no milk products (except goat cheese) and cutting out wheat/breads.
I hope you feel better and see a respiratory specialist soon! If you are not now on asthma medications and you are diagnosed with asthma, you will get huge relief soon from the new asthma meds. Good luck, ella
Posts: 2557 | From home | Registered: Aug 2006
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
PS: just read your post again; you are taking your mom's asthma meds. Sorry -- but YOU need to go to the respiratory specialist and see what they prescribe for you! Feel better and take care.
Posts: 2557 | From home | Registered: Aug 2006
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posted
as someone who has had severe breathing trouble for a while now, if a doctor dismisses it as insignificant, it's time for another opinion.
I understand your desperation, but not sure it's a great idea to self-medicate.
Posts: 169 | From former Philadelphian | Registered: Jun 2006
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daystar1952
Frequent Contributor (1K+ posts)
Member # 3255
posted
Hi....you say this problem comes every 4 months ..approx. That would tend to make me think that it was perhaps a microbe's life cycle and that it may not be a problem with the lungs itself but may be the nerves that control the breathing muscles. Have you been tested for Babesia. Many feel that Babesia causes the air hunger so maybe it can also cause the opposite. My air hunger goes away when I treat for babesia. You may also want to check out the Cisca Salt Pipe. Just google it in quotes. I have several. It's salt therapy for the lungs. It can improve asthma, bronchitis and other respiratory problems. When I use it faithfully every day (which hasn't been lately) I greatly diminish my need for an inhaler
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
I am with LymeEd and VermontLymie here. Don't mess around. See a doctor. While it might be a babesia thing, it might be something unrelated. A clear chest xray probably means very little - I don't imagine they're all that sensitive.
Can you make an appointment to be seen by someone? I wouldn't mention Lyme until I'm in the door!!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Have you been tested for Babesia?
If mom has asthma, I'd get checked out for that too. I wouldn't play around trying to self medicate.
I've had Babesia and I remember some freaky lung/breathing symptoms that got frighteningly worse on Biaxin XL.
PCP had me usuing Albuterol rescue inhaler. It helped some, but not enough. Then she put me on Singulair & the rescue inhaler. I made it through the second week of ABX.
If I knew then, what I know now! The Singulair is albuterol + an inhaled steroid (NoNo!?). Oops!
I also remember seeing an asthma commercial at the time. On the commercial it looked like the person wasn't able to contract their chest. I remember thinking it was different from what I felt because my chest seemed to be expanding & contracting. I just felt like I wasn't getting enough air.
I would definitely get it checked out.
Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
I agree with all who have suggested that you see a respiratory specialist. What you are describing sounds like asthma, but you need your own meds not Mom's. A chest x-ray is not going to pick up inflammation in your lungs which is what you are describing. Please get to a doc soon.
Correction: Singulair is not albuterol and a steriod.
In the meantime, you might find pursed lip breathing helpful. It is done by exhaling through lips like you are going to whistle. And done slowly. It is controlled exhaling instead of trying to force an exhallation.
Keep us posted on how you are doing, Karen
Posts: 1689 | From Maine | Registered: Jun 2004
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
hi Citruslyme
sorry to hear you are still having lung problems.
Ditto what Michelle M & the others have reccomended. See a lung specialist asap.
This is serious & not a good idea to self treat.
I hope you can feel better soon
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
I have severe breathing problems sometimes, and have been in babesia treatment again, I think the first time I was treated, was not long enough, it was for 3 months.
I think? it is lyme and babesia for myself, regarding the lungs, I treated lyme and breathing good, then started to get worse,
VERY worse air hunger, so went to babesia treatment, and so far, it is going ok, not that great.
Mine is not the air hunger like before, it is now also my sinus, like a congestion, in my nose and throat, and lungs, like a closing, like
inflammation, and it will kill me. I have Salbuotomal, an inhaler, for now, helps tiny but.
I will let you know how this clindmycin and quinine go.
DEADLY DEADLY herxing from babesia treatment, the worst I have ever had, the worst,
I mean, you gottta pray or go to another place in your mind to get through it it is that bad. ALmost loonie from this dam treatment, hopefully temporary LOONIE.
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
quote:Originally posted by kgg:
Correction: Singulair is not albuterol and a steriod.
Oops! Sorry.
Thanks for the correction Karen. It was Advair(not singulair), which is fluticasone propionate + salmeterol.
An effective inhaled corticosteroid: fluticasone propionate. This medicine reduces the inflammation in the airways.
An effective inhaled long-acting bronchodilator: salmeterol. This medicine works by helping to relax the muscles surrounding the airways.
I found a warning about Salmeterol, but somehow went off on a tangent & lost it. It was scary stuff.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
It is also possible to give yourself a panic attack, when you feel like you're not breathing right.
This could compound the problem. If you panic, you can hyperventilate(sp). That would cause you to feel light-headed.
I had to calm myself down. It might help to think that if you are able to continue to breathe in deeply, you must be able to breathe out or your chest would explode.
Try to relax yourself and listen to some music or find something to do to try to take your mind off it for a little while. If you feel light-headed, try breathing into a paperbag & see if it helps at all.
Is your chest expanding & contracting?
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Maybe you should try to go to another Dr.?
It could have to do with the fact that you walked out on the x-ray. He may have wanted to rule things out before treating you.
I had to have a chest x-ray when I was having problems.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Lynn,
I have not been able to read what others have posted. That skill is still out to lunch for the most part.
I just wanted to let you know that I too have/had trouble with breathing.
I do recall an article in Lyme Times on this but do not recall what the doctor recommended for treatment.
I do know that things have improved over time with treatment and giving myself lots of down time.
I still have trouble breathing but am fine when I am laying down or reclining if I have not over done it.
I have had lots of x rays and they only seem to make my blood count go down now.
It is very scary. I guess you could say I have learned to manage it for the most part.
I continue to hope that with treatment that this too shall go back to normal.
Non lyme docs tried treating me with asthma meds but this only made things worse.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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I have the same symptoms as you describe, my lungs at times do not feel like they can expand, almost like they are stuck or something and or not relaxed enough to move.
This only gets severe when I'm yeasty - it does go away when the yeast is under control.
Things I have used to help get thru it- nettle - yarrow - mullein all 3 herbs are good for the lungs, they are pill form or a tea - along with this at times I have had to do my thing with good old vicks vapor rub...
Put rub on chest at night, old heavy shirt on top along with a hot water bottle - it works wonders, (sometimes I add it to my back as well.
If you are couching up mucus (you need to get it out) I use straight "guaifenesin" not "CF" "DM" just straight guaifenesin...it comes in pill form in drug store - no sugar - the liquid has sugar.
Also if it is yeast - diflucan is the choice of yeast meds (gets in the blood stream) it amazes me when others think I have a cold (chest congestion) and I suggest a course of diflucan and in less them 24 hrs my chest is able to move!
When the yeast is under control - my lungs are normal.
I am like you in the fact that I can feel like I'm not breathing well - go to the doc's - my air intake is taken and I post a high reading 98%/99%, I have asthma like symptoms, but no asthma. I also have sinus problems (both only act up when the yeast is active).
I do have a back up inhaler - and yrs ago I was prescribed "accolate" (acts like a steroid - but not a steroid) - when the yeast was under control I no longer took any of the above. Just within this past yr I became yeasty again so I presently take "singular" every day (acts like a steroid but not one).
Upon gathering info from this forum - I just started the salt pipe (1 month now) not to sure if it's helping but it's worth a try and can't hurt. Someone also stated that "yeast ease" from www.jnutra.com was good for this - I just ordered it the other day.
I have also found that "raw garlic cloves" helps - one a day.
Lynn please know that these are ONLY suggestions to maybe help you - please if you try any of these things - do them with caution - what works for me may not work for you.
PS - my chest xrays are normal as well as cat scans - I do not have Babs, I do did have lyme and have yeast in my blood stream.
HOPE this helps some and know your not alone!
Posts: 374 | From NJ | Registered: Aug 2006
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I am so sorry you are in pain...all I can say is that I am praying for you.
If you are scared, go back to that clinic and tell them you are suffocating and want immediated attention from a pulmonary expert.
Cry if you have to or make a scene. You are in real pain and they won't want you to fall over on their watch. OUr pain is comparable to end stage congestive heart failure!! Demand care...
I'm so sorry we must be this way, someday people will know the extent of pain we endure.
Please keep us posted.
Love and e-hugs Kim
-------------------- We are spiritual beings on a human journey...
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
(((Lynn)))
I think people here have very good intentions but...us not being doctors and not knowing your exact medical history it would seem reckless to assume its yeast ect... and self treat with supps,teas,herbs ect... You need to find the exact cause.
Not everything is yeast related. Maybe its lyme/babs related but mabe not...
You need to go to a pulmonologist (lung specialist)
or try to come back to the US to see your LLMD again to have your babs treated( for which you you tested positive for) along with the lyme.
If you can't get back right now can you call your LLMD in Pa & and ask him for some advice?
Babs/lyme and many lung diseases do not show up on x-rays.
I know things are hard right now but try to find a way to see either a pulmonologist or back to your LLMD. Please . I am worried about you & only say this with love
hang in there Dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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And I did state in my post that I'm ONLY making suggestions as to what it could be possibly and what could possibly help.
As I suffered and do suffer with the same things - and have gone thru all the tests for the lungs already.
I did caution her as well, as I agree that she should talk this over with her lyme doc FIRST before trying anything.
And I also agree that she should not fool around with a breathing problem - it could be something else - and things should be ruled out.
For me when all else failed they thru me on a course of steroids which leads to a vicious cycle in the long run - on again off again - only to become more yeasty which makes things worse.
None of us are doc's here - but we do LIVE it - hense knowing more at times then the doc's know, it's not easy for any of us - but that is what staying in touch with others that live it is for (thank God for that).....thru others we learn - and what works for one may not work for another, it is trial and error for us all.
And sometimes it's trial and error for the doc's as well! Posts: 374 | From NJ | Registered: Aug 2006
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posted
Hi citrus lyme- I went through exactly what you did 8 years ago. I couldn't exhale. My xray was fine but I flunked all of the pulmonary tests. This is before I got diagnosed with lyme.
But - you have to keep going back to the clinic. What helped me was seeing a DO - Doctor of Osteopathic medicine. He basically showed me that the muscles controlling my breathing were almost paralyzed. He helped along with some meds but giving me some exercises. He ultimately referred me to an LLMD because he suspected lyme.
I wasn't sleeping because I'd wake up gasping for air. All of the muscles in my stomach and chest were so sight. The doc prescribed a sleeping med and I was so afraid to take it because I felt I wouldn't wake up if I couldn't breathe. But eventualy I took it and it helped tremendously - along with the exercises the DO gave me.
It is so scary. I was in bed for months before I saw this DO.
Hang in there.
Posts: 298 | From Maine | Registered: Jan 2004
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Lynn,
I'm not a doctor so these are just thoughts.
What you describe does not sound like my experience with asthma. When my asthma acts up, I can't inhale enough. I breathe very shallow.
Do you have muscle tightness anywhere but your lungs? Lyme can cause inflammation in the muscles leading to tightness. I would assume if it was near your lungs, it would impact your breathing. There are ways to relax muscles, including muscle relaxers and high doses of magnesium.
Is there any way you can see another doctor? I don't know how the Canadian health system works, but this doctor is obviously not helping you.
If nothing else, can you go to an ER when it is acting up? Could the ER refer you to a specialist? Just make sure they DO NOT give you steroids. If you have to, lie and tell them you had an allergic reaction to steroids or something.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
I know the steriods are bad and I wouldn't recommend them either and hate to take them.
But sometimes you have no choice - if your breathing is very bad - you have no choice but to get the lungs open.
When I have to take steriods I only take it for a day or 2 (it's rare that I take them now) but there was a time back in 1996/97 that they were a must every six months or so for at least a week - at a time.
I'm glad I'm thru that!
Posts: 374 | From NJ | Registered: Aug 2006
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hardynaka
Frequent Contributor (1K+ posts)
Member # 8099
posted
Citruslyme, I was on your skin in February-March this year. Just check my posts on air hunger: emergencies, panic and all...
It was babs I think, as the symptom went out with babs treatment.
The lack of oxigenation (or hyperventilation, no one knows) caused me panic a few times and paralysis of all legs and arms for many hours once.
I had difficulty to move legs/ walk for many hours in a day back in Feb/ March. The second time in emergency, my blood pressure was going up and down in a matter of minutes. The ducks helped zero.
My babs treatment was fairly unconventional, but I'm free of this awful and scary symptom for the last months. Knocking on wood still!!!
Try breathing deep and slow as possible, from the belly not from lungs, if you see what I mean. And try figuring out if you don't have babs and treat it.
My last babs symptoms faded after PC-noni (Dr. K's treatment) and it was rather fast (I thought it was going to take months, it took weeks). I also used the KMT though, but not too much (also a few weeks) for babs.
Treating babs will also reduce anxiety, deprression, mood swings. At least, that's what it did for me. Hang on!
Selma
Posts: 1086 | From Switzerland | Registered: Oct 2005
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posted
Forgot - one more thing. The only time I felt that I could get a good breath was to yawn. I forced myself to yawn so I could get some air.
Posts: 298 | From Maine | Registered: Jan 2004
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Hi. I myself have air-hunger issues. To be seen by first LLMD later this month.
However, due to breathing issues, I was sent for a Pulmonary Function Test.
An internist actually ordered the test. Of course I passed, but my air hunger continues.
I saw a pulmonologist also... He tried to dx. me with everything from COPD to anxiety.
He was no help at all. The lung tests did make me feel better mentally. Hope you feel better soon.
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
By all means, see another doctor. Maybe you could get checked for mycoplasma pneumonia. My daughter has that, and zithromax helps. So does doxycycline.
She never had asthma before she got sick with bartonella.
Anyway, keep coming back, like a bad penny, until they listen.
By the way, for anyone with asthma. I tried Advair and albuterol for years and got so bad that I could barely function. I switched to Asmanex and Xopenex, and it's made all the difference.
posted
There are cases in the medical literature of diaphragm paralysis due to lyme. Here is one article from the UK on the subject. A Google search will find more.
Case report A 59 year old female presented with a recent history of abdominal pain and falls because of a weakness in her right leg.
She had been complaining of flu-like symptoms with twitches in her back and pain in her right side for a month. She gave a history of recently having been bitten by ticks whilst gardening.
There was no history of any recent rash. On the day of presentation, she complained of a mild cough, reduced appetite, abdominal distension, constipation, and dysuria. She was a lifelong smoker but was generally healthy.
At presentation her blood pressure was 206/107 mm Hg. There was some epigastric tenderness. She had bruising on her right leg that she associated with the falls.
The chest radiograph on admission was unremarkable. Abdominal x ray showed dilated loops of small bowel and a loaded colon. Her only blood abnormality was hyponatraemia at 121 mmol/l. She was admitted for further investigations.
On day 3 of admission she became increasingly short of breath and on examination had decreased bibasal air entry.
On day 4 her respiratory rate was 25/min and arterial blood gases (ABG) demonstrated hypoxaemia but adequate ventilation with pH 7.51, Po2 6.7 kPa, and Pco2 4.7 kPa.
Her chest radiograph showed left basal changes. On day 5 her Pco2 had risen to 6.8; she was admitted to the intensive care unit and non-invasive ventilatory support was commenced.
She had a decreased inspiratory pressure and a decreased vital capacity. She was noted to have absent gag reflex and poor swallow and on day 6 was intubated to protect against aspiration pneumonia.
The patient remained fully conscious and co-operative, easily triggering the ventilator but requiring significant inspiratory pressure support of 20 cm H2O.
Neurological examination demonstrated right hip and knee extensor weakness (2/5), absent right knee jerk, and a loss of sensation on her left lateral thigh.
Because she lived in a known endemic area we thought about Lyme disease, but we also considered differential diagnoses such as Guillain-Barre syndrome, listeriosis, and acute poliomyelitis.
We commenced treatment with doxycycline whilst awaiting the results of further investigations. Around this time the patient indicated a small black lesion on her upper abdomen that was removed and on closer examination was identified as tick mouthparts (fig 1).
-------------------- nan Posts: 2135 | From Tick Country | Registered: Oct 2000
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
quote:Originally posted by Ladylee210: I know the steriods are bad and I wouldn't recommend them either and hate to take them.
But sometimes you have no choice - if your breathing is very bad - you have no choice but to get the lungs open.
I agree. But I was not talking about an emergency. I was suggesting that the ER may be a way in to see a specialist if she has no other way for referral.
Canada is a different medical system than in the US. I thought this might be an option.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
I was reading something earlier about lung symptoms and Mycoplasmas. I'm soooo sorry, I forgot where it was.
I don't have time now but I'll try to look for it later. I think I was researching tick-testing laboratory options at the time.
I hope maybe you're feeling better by now.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
So is Advair an absolute no-no for Lymies? My pulmonologist is aware that I have Lyme and I told him that we are not supposed to have steroids and he said inhaled steroids are ok. Is he wrong?
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