Really upset and scared

I'm on my 4th day of bad chest pain/tightness & burning when I breathe. I've been to the er alot in the past 9 months since I've been sick so my dad is threatening to throw me out if I go back. I would be homeless cuz I can't work. I had two clots from a picc line in January and am on 6mg of warfarin. I don't know if it's the lyme or a pe. I've been crying in pain off and on for 4 days. I'm scared I'm going to die. I've tried to be calm but it just keeps getting worse. I'm all alone in my bed. Everyone around here just thinks I'm crazy cuz I've gone so long without figuring out what is wrong with me. Now I have the positive lyme test and the llmd appointment and they still don't believe me. I'm really scared i don't want to die and this chest pain feels like I'm dying. =(

There were times while I was sick when I thought death would be a relief. I was not scared to die. I was concerned that I would live, like that, for my children to see, to be a burden for my husband and my little ones. With proper treatment, I recovered. Yes, the pain was horrible and I could not take pain meds because I was pregnant. besides Lyme and Barto, I had to deal with pain from a car accident--again, no pain pills that I could take except for tylenol (which didn't help) because I was pregnant. It will get better, try not to get worked up and scared of dying.

It is very unlikely that you will die from this, unless you don't get treated and you develop complications. You have something to look forward, your LLMD appointment. Things will get better. And we are here for you. I find that it takes too much energy to convince those around us, including family, of these diseases. So I stopped convincing people. The neuro sent me to a psychiatrist. My husband was also doubting me. But he did take me to every appointment and that is all I could ask of him. I didn't put too much pressure on him or try to make him understand because I knew he won't and we'd end up in a fight. I had this forum 5 years ago for support and I made it without trying to convince every person in the world I'm not crazy. Who cares what they think? If they don't understand, they don't understand. Focus on YOU.

Post Edited (Simela1) : 4/16/2015 8:21:42 AM (GMT-6)

Starlette- I'm so so so sorry :(. We are all here for you, I promise. Is there ANYWAY you can call and convince your LLMD to see you earlier, explain your sitaution and see what happens? Hang in there a little bit longer, it will get better :).

Starlette,

I am so sorry you are going through this and feel you have no one to help.

If you really think you are seriously sick, you need to call 911. Your health and safety is too important to worry about what anyone thinks.

Is there another member of your household or another relative, friend or neighbor who you could reach out to? Often it seems we are alone, when in fact, people would really want to help. It is just wrong that you should suffer like this.

No literally noone Around me believes me cuz until now all my tests/hospital visits came up with nothing. The lyme titer and 23kd igg band came back positive last week so I made the llmd appointment For june. I don't know anymore. The pain and suffocating is just too much

That is scary =(

Starlette - you've had all the tests showing that your heart is good and you test weekly for the amount of coumadin in your system - a blood clot is highly unlikely - take my word for it. My hubby has been on coumadin for the last 6 years - we've already gone through a bunch of scares only to find out that if the numbers are good weekly, then there is a very, very minor chance that it could be a blood clot - and if you were bleeding internally, your INR would reflect that as well - plus you would have other symptoms to go along with it.

It's most likely a combination of things that you are dealing with - like Lyme (Costochondritis - inflammation of the cartilage of the rib cage), Babesia (air hunger, which feels like someone is suffocating you or you just can never catch your breath), and quite frankly, a bit of panic.

Sometimes I would use a heating pad to help ease the pain from the costochondritis, the air hunger is hard to deal with, but about all you can do is concentrate on your breathing (make sure you are taking 'deeper' breaths instead of breathing very shallowly), prop yourself up in bed and rest.

The anxiety can be vicious when you have these infections - many here can attest to that, including myself. Do you have any anti-anxiety meds, like Xanax? It might be helpful for you to take one if you do. Just to help you get through this part of this.

And hang tight - they will believe when you get better with treatment for these infections.

Did you try the heating pad on your chest? Traveler really knows her stuff and you should do exactly what she says!

Stop trying to get people to believe you. We believe you and your lyme doc will believe you. You really need to concentrate on yourself. You are not going to die. try and meditate. Think of calm things. Think of sitting in the sun and feeling good. I am telling you, you can make this a little better if you do the above.

Calm.....Ohmmmmmm

LOL!! Good description!! I never thought to describe it that way! yes, I have had that too. It's quite disturbing, but it's due to the messages getting mixed up as they travel to your nerves in your legs.

Detoxing is about the only thing you can do right now to combat these symptoms, though.

And thank you for the kind words, Dancing Bear - LOL!! I've been through a lot with these infections, but what I did doesn't always work for everyone. It's just something that many should try is all.

You are describing Neuro Lyme and/or Bartonella symptoms. Many of us here know them all too well - and yes, it's very disturbing.

Again, detoxing and treatments are the only things that will make a big impact on these symptoms. It's due to the nerves inside of you being affected, and the only thing that helps is detoxing. Sorry.

I'm sorry again about posting like this when all of you are suffering as well. It is just so horrible.

But - that's the thing - we understand!!! There's just only so much that can be done about the way other people think - so dwelling on it only leads to more upset for us -not them!

And as for the nerve issues, that's something almost all of us understand all too well also. But again, there is only so much that can be done to help it immediately. Literally, the only thing that I know of that works for everyone, is detoxing. Some people get a little bit of relieve with pharma meds, but there are quite a few you may have to try out first, and there's never a guarantee that any of them will actually help you.

There are many that are working hard to bring recognition to these infections and the treatments that are needed - as well as our suffering, but none of that is quick either! I don't know if you are old enough or not to remember what the HIV/AIDS movement was like in the 1980's, but many that were in that movement are saying that we are going through much of the same issues with Lyme. So in the mean time, we have to watch out for and help each other through this as much as we can.