frustrated with no clear diagnosis

I am starting yet another thread- sorry, have a few going.
I am just so frustrated with having had this symptom for about 6 weeks now and having to self diagnose. The symptom is a gripped up upper chest- in the bronchial area.
It was worse in the beginning. I went to three drs who were all clueless.
It is worse when I exercise. I mentioned fast resting heart rate in another thread but that seems to be doing ok in the last few days so that is good.
But I still have this griped up tight upper chest- like in the upper bronchials. And I don't know what it is.
I had had a chest x ray like two weeks prior to getting this. That x ray was fine but I don't know if I should do another now that I have had this?
So I just right now tried to do 5 minutes on my exercise bike to see if I have had improvement, because since exercise makes it worse I have been doing practically none. So I did 5 minutes and the upper bronchials are totally gripped up again. It is such a bummer.
I don't think it is asthma- all the drs said no and I don't think it feels like that.
It is way up high on my chest like along the collar bone. Sometimes it feels kind of burning. and it feels tight, and gripped up- and much worse when I do even minimal exercise. Prior to this coming on 6 weeks ago I could do plenty of exercise.
I cant figure out if it is a infection- my dr said if it was a lung infection there would be mucous or coughing. There isn't. So I am led to think it is a flare up of a tick illness- so am treating babesia.
And yet it is still there.
I am so frustrated not having a diagnosis already! I want someone to figure it out so I can treat it and clear it. It worries and limits me so much. And it has been so long. I already regret doing just these 5 minutes on the bike because now I will feel worse all night.Yet I cant find anyone who can diagnose me.
Should I assume it is babesia? get another chest x ray? I am trying to find someone who does muscle testing to see if they can diagnose me.
Already seen three clueless drs. Seeing a lyme specialist dr on Wednesday but I don't think she is good at diagnosing.
I am so frightened and frustrated with just waiting for this to go away and not having a clear diagnosis. It came on all at once. Following a virus. Any suggestions on how I can get this clearly diagnosed or any other ideas?
Been about ten or 15 minutes since I did just 5 minutes on the exercise bike and the upper chest is completely gripped up tight. it is so scary. Feels kinda like asthma. I can breathe but it is just tight. I do have an asthma inhaler but I never use it. I specifically went to my dr last week to say- is this asthma and he said it is definitely not. but I just don't know. it is awful. I was not feeling that bad until I did the 5 minutes of exercise now it is horrible and frightening.

Post Edited (flowergarden) : 11/18/2018 5:15:08 PM (GMT-7)

You need to get a lyme doctor and order a IGeneX test or DNA Connections test. If it comes back negative, they might diagnosis you based on the symptoms. If it isn't lyme, ask them to be sure it isn't lyme.

Regular doctors, based on your insurance, will keep you as sick as possible to maximize their profit while doing tests and pro-long your disease.

I ran a 5k a day then one day I had problems and it got worse and worse as I exercised.
I was never able to get a diagnosis so I pleaded with my doctor to just call it jungle fever -- because antibiotics cleared it up 100% and then it came back 100% when I ran out, until I could see an specialist. At the time I didn't know how compromised our medical system was and I foolishly continued to see the regular MD as he continued to wreck my life. It was only after I fired him and found out he lied about my IGeneX result that I was able to get help. You could have some other disease that is not related to lyme at all, but you want a specialist to determine that not some doctor with a conflict of interest. Go find a LLMD/LLND and get the tests. Ignore regular doctors.

yes I had a tick bite 5 years ago- got lyme, breathing issues started then. Treated first with abx which didn't work, then with herbs that did work. went to the hansa ctr a bunch. had lots of positive lyme tests.
2 yrs ago had a flare of air hunger which hansa treated with babesia herbs and it went away, which leads me to think babesia is in me.
Had low grade bad breathing ever since I got the tick bite. Been getting worse this fall.
Then in September got a weird inner ear virus for three weeks.
At the end of that my upper chest seized up and has been so for 5 weeks.
So I don't know if it is asthma, babesia, or a lung infection bacterial or viral.
Saw a couple NDs and they said it seems fine in my lungs- but at home sometimes and tonight I hear a whistling sound in my lungs when I breathe.
I have another dr I see who is more thorough but not very lyme literate. But better than the other two in term of general diagnosing. I should have seen him. I am still 100% unclear if I have a tick illness flare, or asthma, or an infection- but I am done with guessing and self diagnosing. I will go to asmany drs as I have to in order to get a clear answer.
This feels different than the babesia air hunger I had two years ago. This feels more like an infection and I am concerned I am just letting it go untreated. Dr's are so clueless about difficult things.

how is costochondritis treated?

somuchfun:I looked it up, but can you please tell me how the symptoms of it present for you? Is it just muscle tightness in the upper chest?
for me it is directly related to breathing. When I do ay exercise it seizes up and feels like it comes from the lungs. I don't know if it is heart or lungs. And it makes it hard to breathe, and it gets warm in that area on the inside like a burning- and a tightness. After a lot of resting and stillness it calms down.

I am still trying the babsia protocol until I rule that out because there has been a little improvement in the breathing since I started that. I just literally don't know what I have and am so frustrated with doctors having no clue about how to diagnose me.

flowergarden said...
yes I had a tick bite 5 years ago- got lyme, breathing issues started then. Treated first with abx which didn't work, then with herbs that did work. went to the hansa ctr a bunch. had lots of positive lyme tests.
2 yrs ago had a flare of air hunger which hansa treated with babesia herbs and it went away, which leads me to think babesia is in me.
Had low grade bad breathing ever since I got the tick bite. Been getting worse this fall.
Then in September got a weird inner ear virus for three weeks.
At the end of that my upper chest seized up and has been so for 5 weeks.
So I don't know if it is asthma, babesia, or a lung infection bacterial or viral.
Saw a couple NDs and they said it seems fine in my lungs- but at home sometimes and tonight I hear a whistling sound in my lungs when I breathe.
I have another dr I see who is more thorough but not very lyme literate. But better than the other two in term of general diagnosing. I should have seen him. I am still 100% unclear if I have a tick illness flare, or asthma, or an infection- but I am done with guessing and self diagnosing. I will go to asmany drs as I have to in order to get a clear answer.
This feels different than the babesia air hunger I had two years ago. This feels more like an infection and I am concerned I am just letting it go untreated. Dr's are so clueless about difficult things.

Do you have plans to go back to the Hansa centre?

flowergarden said...
Asthma is still on the table. I tried to do a pulmonary function test ( I spent a lot of my day at the hospital today because I was tired of trying to self diagnose). but I got scared about doing the asthma test where you breathe in the abuturol or whatever for five minutes. I know I am just really scared about breathing things. At least they completely checked my heart out ( Ekg, ecg, ) and it is all 100% fine. even my heart rate was ok- much of the time in the 80's which I think is not ideal and some in the 90s even less ideal but the dr said it was totally normal.

Five minutes? You should only breathe it in once. If scared of Albuterol, ask them for Budesonide/formoterol. Don't worry. You will breathe a little easier, or no difference at all. You should definitely rule out (or confirm) asthma.

Also, you could buy a cheap pulse oximeter with USB/memory and test yourself during day and night (pulse rate + oxygen levels). Your SpO2 should stay above 94%.

update: I saw a LLND today who specializes in lyme. She said it didn't sound so much like I have babesia. Because that is more air hunger and what I have is this persistent tightness in my upper bronchials. She said it sounded more like asthma. It is confusing though, because I thought asthma was more like people breathe normally, then they get a trigger and have an attack, where it gets really seized up, and is helped by a inhaler. She said I should take this herbal asthma formula for a week and we will meet back in a week. She also said I should try the inhaler I have but had never used and if it helps it is asthma. When I tried to get the pulmonary function test this week but was too scared, the tester also said if I try the inhaler at home and it helps that shows it is asthma. The LLND also said the virus I had prior could have been enough to trigger an acute asthma. But she didn't know for sure, we are just exploring.
So I did a few puffs of the inhaler when I got home and things partially opened up- felt about 60% better- but only for about 45 minutes then it tightened up again. So I don't know what that means.

LLND also said I could get the babesia igenex test which tests for all strains and is 85% accurate- but I have to pay $220 out of pocket. I plan to do it because I need to know for sure if I am dealing with it. But the llnd did not say it seemed like it.
so I am still undiagnosed. I need a clear diagnosis. It just feels like this tightness in my upper chest, d hard to breathe easily. It may be a form of asthma. I just don't know.
If I can get up the courage I want to retry the pulmonary function test- I just got scared to breathe in the abuturol for 5 minutes. Plus I thought if it was asthma it relieves the tightness for longer than 45 minutes. I did have a chest x ray in septemeber and it was all clear- so that makes me feel ok about that, but I got the tightness after that so don't know if I should get another one.
I don't really know what to do or how to get a diagnosis. Probably I should shell out the $220 for the babesia test, and other than that I guess I could get the PFT another x ray, what else can I do to diagnose this? Please offer any ideas as I need to get past this. asthma still a distinct possibility but confused about how it is presenting - can anyone with asthma advise me about that?

“LLND also said I could get the babesia igenex test which tests for all strains and is 85% accurate- but I have to pay $220 out of pocket”

I don’t believe it’s 85% accurate.

You could do the test - and if it’s positive - then you know but if it is negative it really won’t rule Babs out....unfortunately