Thanks Jackie, I will tell him. :)
Ditto the comments by youvegot!
My mother had congestive heart failure that came on rather suddenly in late middle age, and it was before there much awareness of Lyme ... tho I suspect Lyme was very possibly the cause, based on other details I won't bore you with here.
Keep after the docs, and tell your fiance he has a fan club all across the world. :)
Thanks for love and good wishes. Yes, my first tick bite that my daughters remembered ( I had no memory) was 20 years ago and I just started treatment with an LLMD in March.
Yes, they monitored oxygen levels. Going to see all docs within 2 weeks and left LLMD message to call.
I can't deny I am scared but my fiancée says " this is the cards we were dealt so we have to deal with it". I feel blessed he hasn't run for the hills!
Glad to hear you're home. Hospital really is horrible every time.
My mother has borderline congestive heart failure from lyme. You have to have lyme for many years untreated to get to this, though.
Ask you lyme doc about possible drug treatments that might be safe for you, to prevent it getting worse. If it is heart failure, they cannot reverse the damage much, but they can prevent things getting worse. There are lots of different drug options.
The liquid on your lungs is likely to be cause by your heart and so you could possibly be prone to getting this kind of problem again, ask the doc about that too.
Finally, ask about having a tank of oxygen at home. Usually this is only used for acute heart failure, but when you have lyme disease you are struggling with sub optimal oxygen anyway and it might help to have a boost. I'd ask the lyme doc obviously as the cardiologist may not be very up on this. Did they monitor your oxygen levels in hospital with a thingy on your finger?Non lyme docs generally don't know that when you have lyme, your oxygen level goes lower wehn you are moving about - that doesn't happen to other people.
Anyway, glad to hear you are home and sending lots of love, Take good care of yourself, rest and be glad you are past the worst. You ARE brave and strong!
Thanks Bob. I am finally home, although felt really bad yesterday when I got home but better today.
I should have hematologist test me for toxoplasma. She tested IGG.
Only good thing was getting pain meds ( used for herxing, not that they understood) through IV. Otherwise hate hospital.
Get better soon! It's good that your hematologist is Lyme aware, bet your anemia isn't iron deficiency. Were I hospitalized (Lord don't ever let those ignorami get me again!), I'd ask to be tested for toxoplasma. I've been researching the effects it has on cats, and on humans, and you're there.
Thanks for everyone's well wishes and love. I am still in the hospital. I can feel the fluid still in my lungs so I am not sure I will get to leave today. Waiting on ( not too swift) hospitalist.
He says I am borderline congestive heart failure but I am not really sure, it could be the pneumonia.
Rico, its like the Bart's lesions in my brain, one month not there, next month there.
Trying to be brave and strong. Thanks again!
Mojogal, I'm so sorry to hear your this ill.
Yes, that's exactly what happened to me when I was 16 and got my first major lyme collapse. I had double pneumonia adn myocarditis, (inflammation of the heart muscle) and very severe tachycardia. (300bpm and over)
I got better with lots of antibiotics. I hope you are getting better already.
If you can send any more details about the heart situation I'll try to help with any info I know.
As for the lungs, ask about having them aspirated - if the doc thinks that is appropriate, it can elp a lot when you are too ewak to cough out the fluid yourself. You decline very rapidly if you cannot keep clearing out your lungs. When you have lyme, this process is of course far more exhausting.
Sending you lots of love. Be brave and strong.
xxx
I am so sorry you have been so sick! It is always unsettling when someone who has been getting treatment for an extended time has a bout of something serious.
I have heard of various levels and balances in the body changing from one month to another. My kidneys are the only example I have. Although I did have a lesion on my left adrenal when I had the really noticeable adrenal fatigue symptoms, but then on the next round of scans, it was gone.
Heart and anemia issues are definitely serious. I hope you got good care and didn't get hassled our lectured. Than goodness for the Lyme aware hematologist.
I hope you're already home and feeling better!
Whew! I'm so glad to hear that -- both that you got a Lyme-savvy doc AND that you're getting sprung from the hospital -- all good thoughts going your way -- !!!
Thanks Jackie. I lucked out to get a Lyme aware hematologist who called her. I hope I get out tomorrow!
Hmm, the system just ate my post to you ... so if there's another message that pops up from me, it might overlap with this one.
Does your Lyme doc know you are in hospital and what's going on? I would definitely get someone in your family to call the Lyme doc and (since it's Sat.) leave a message with his/her service that you are in XYZ hospital with anemia and heart problems, please contact the hospital, so that your LLMD can communicate with the hospital staff (who may not be familiar with the problems Lyme can cause for the heart, not to mention the rest of your body).
Thinking of you, keep us posted -- big hugs! J.