Well, I thought my lyme days were over, but after 3 months off abx, symptoms came creeping back.
I was exercising 5 days a week and full of energy.
Now, when I walk, especially up the stairs, I get short of breath. I don't remember this symptom before-(probably because my heart use to pound so loud I only noticed that).
I don't have tachycardia like before-My new symptoms are shortness of breath with mild exertion, mild dizziness and chest pain. I would go to my DR, but I had 2 echo's before and they were ok. Last one a year ago, last ekg 6 months ago. My LLMD says to wait a month, and see how I feel (I"m back on abx)
However, now I'm worried something is wrong with my heart-
ANY one else have shortness of breath with mild activity? I can't believe last month I was on the eliptical for 30 minutes at the gym!
Posted by bettyg (Member # 6147) on :
shoney,
sorry, i have no info but taking this to the top so it doesn't get buried.
i've always been short of breath. my lungs show the effect of 39 yrs. with lyme.
i've NEVER smoked in my life, but have gotten secondary smoke all my work life of 31 years, and my lungs are those of someone who SMOKED! Posted by shelly23 (Member # 16124) on :
I am not sure what works mine comes and goes i am sorry i dont know of any suggestions but i feel your pain. Maybe lighten up on the work out maybe its to much on your body Best wishes
Posted by shoney (Member # 9925) on :
I can't work out now-I get short of breath just walking, and dizzy.
Posted by Geneal (Member # 10375) on :
POTs maybe with NMH?
Shortness of breath and dizziness are symptoms also of this.
Dysautonomia issues caused by Lyme.
Often exacerbated by exercise.
Maybe ask your doc for a referral for a tilt table test.
I go through cycles of this.
Speaking while walking is almost an impossible task at times.
I have to take cortef to help with this.
I stopped for a while.
Noticed a real increase in dizziness, shortness of breath, etc.
Started back on low dose cortef and my symptoms are definitely better.
Hugs,
Geneal
Posted by shoney (Member # 9925) on :
I had POTS-it actually went away this past year. My pulse would go up to 120 just standing; thank goodness I can stand for long periods now.
I think perhaps my symptoms are creeping back, and it's worse with my herx. (Just started back on abx after 2 1/2 lovely, symptom free months off)
This disease stinks!
Posted by lymednva (Member # 9098) on :
Babesia comes to mind for me also. I have dealt with NMH now POTS, and although I'm improving, it's not gone. I'm still treating Babs.
Posted by shoney (Member # 9925) on :
I'm back on malaone-were you short of breath all the time, or only with mild exertion?
Lymednva-My POTS went away; keep hope-I couldn't even stand in the beginning, without my pulse hitting 120, and my BP dropping. Last month I was exercising for 45-60 minutes-no problem.
Posted by scared08 (Member # 14695) on :
Shoney,
Bless your heart; I am so sorry!!! I have been there and oh my I know how dis-heartening it is! But, please try to remember that you made it there once; YOU'LL GET THERE AGAIN!!!!!!!!
I only have 2 cents to add as you have really gotten some good advice already! I just wanted to say, PLEASE look at GENEAL'S reply again as I STRONGLY feel it is very good and approiate advice!!!!!!!!!!
I think, (only my opinion) that a Tilt Table Test is a must!!!! I also agree the your POTS is probably back (sorry), and that Dysautonomia is a very strong possibility!!!!!!!!!!!!
Everyone has given wonderful advice!! BETTY, you are so sweet to bump this up! GENEAL, I have to wonder if you are or were in the medical field???????? You must have been. If not, you should be!
Okay, I am not the most popular when I do this but......it scares me when we assume that everything sx we have is due to Lyme. And 99% of the time Lyme & Co. is the underlying cause, but it can attack EVERY part of your body. I know everybody already knows this, but you have to deal with/treat the problems that it create also.
I am a strong beleiver that most of the time you can't beat Lyme & Co. with abx. alone, especially if you've been infected for some time. You have to look at and TEST the Endocrine Systom---CNS---PNS--- the heart, etc.... I know that you already know this given that you had POTS in the past, but I'm not real comfortable you "waiting a month and see what happens"----Sorry!
When you mentioned in the beginning, were you referring to a month ago when your sx first returned, or a long time ago??
Have you been tested for Babesia??? Just FYI---I have POTS, Dysautonomia, Adrenal and Pitutary issues, severe malnutrition (w/weight gain?!!), heart, lung and kidney damage and many, many lesions on the brain.
I am so short of breath very often that I can't eat a meal or talk on the phone, or anyone at home. BUT, it is not as often since I have started the Flonef, a corticosteroid for Dysautonomia. It has brought my BP back up, heart rate is better but not good, dizziness is better,etc....
I have seen MANY Dr.'s and had a LLMD in the past that was supposed to be wonderful. However, the one that I am seeing now is the FIRST AND ONLY one to discover all of this!!!!!
So please take Geneal advice to heart!!!! Check you Endocrine Sys. and defintly your heart with a Tilt Table done ONLY by a Cardiologist!!
Again, I sorry! Yep---as usual what started out as my 2 cents turned into a novel, huh!!!! Sorry guys---maybe it's because I can't talk most of the time?????? I've become aweful 'wordy'??????
Posted by shoney (Member # 9925) on :
When I first got sick, @ 2years ago, my POTS was horrible, debilitating. It hasn't really beeen an issue in several months. I saw a respected neurologist who is an expert in POTS_he didn't want to give me anything!
My cardiologist had suggested midrodine or florinef, but my neurologist said no. As my other symptoms decreased, so did my POTS.
My symptoms started creeping back last month-after being symptom free for a while-foot pain, dizzy, palps, ear pain and shortness of breath.
I try not to blame everything on lyme-but I feel it may be babs coming back.
Did either of you have your POTS go away completely, the return months later?
Posted by Geneal (Member # 10375) on :
Babs is a strong possibility with the palps as well.
I had a nuclear stress test done and go back yearly to a cardiologist.
So my heart is good so far.
Any night sweats? Excessive day sweats?
Babs is one tough sucker to get a handle on.
I am on my 3rd round of babesia treatment.
Over a year now.
Still having babesia issues.
May be chronic for me.
Hugs,
Geneal
Posted by shoney (Member # 9925) on :
No, but I haven't had night sweats in a year. Actually I had very mild ones last week-just thought they were hormonal (although wrong time of the month)
I never had typical babs symptoms-no air hunger or drenching sweats, but my initial titer was really high, so we treated.
Geneal-I think babs causes POTS-my neurologist told me when the infection finally clears, it takes about 3 months and then the POTS should resolve. I hope your goes away too!
Posted by Starfall1969 (Member # 17353) on :
Sorry, I don't have any real info with shortness of breath, just wanted to say that I've got it too.
Mine is all the time, though, not just with exertion.
For some reason it's really bad today. Almost feels like my whole esophagus is spasming.
I'm taking Prilosec OTC for "heartburn." For a while that at least helped. Now it does nothing.
I had quite a spell this morning with dizziness and balance too. I was just standing at the coffeemaker (I do decaf, so it's not a caffeine issue), and turned my head about an inch. The whole room started rocking like a ship.
A few hours later, the shortness of breath started.
I really hate this. I swear, if the LLMD I'm going to see in 2 months tells me it's not Lyme, I'll blow my head off or somethig.
![[puke]](graemlins/puke.gif)
![[Smile]](smile.gif)
Best wishes