My head is pounding, short of breath all day now, anxiety topped out, that feeling of being on a boat is ridiculous compared to what it was prior to 12 days of abx, body is aching still, crying has eased up, but still there.
Appt. with Lyme doc. isn't for another week. Not sure how to proceed. I feel like this should be done inpatient.
Do hospitals give merit to Babesia testing. I have the WA1 Duncani 1:256 via IFA through Lab Corp. Other than that, just 2 pos. bands for Lyme through Igenix.
My parents have had it with me. I lean on them b/c I am scared and wish they would help me. I don't know where to go from here.
Gary
Posted by Jane2904 (Member # 15917) on :
Gary, so sorry you are feeling so sick right now.
Have you called your LLMD and explained how you are feeling? Don't try and tough it out until next week, He or she needs to know what is going on.
Please call and talk to the LLMD, I am sure they will be able to help.
Best of luck, Jane
Posted by sixgoofykids (Member # 11141) on :
Gary, I think that you might have to stay on your meds. You should be communicating with your LLMD through it all. You need the meds or another treatment to get well.
Sounds to me like you're just getting worse. You will feel worse before you feel better on treatment. A lot worse. If you saw Under Our Skin you will remember Dr. J telling Mandy she might get ER worse from treatment and she did. It's no fun, but if I can do it, so can you.
Posted by seekhelp (Member # 15067) on :
It's so terrible to hear how bad this has been for you Gary. I just pray one day a breakthrough happens and the light flows in. You deserve it.
Regarding your positive lab, you'll get tossed out by a hospital chucking for several reasons:
(1) The illness is not recognized and no one knows what WA-1 is.
(2) This only bothers immune compromised people and you 'surely' aren't that w/o AIDS or other things. Lyme could 'never' do that and even so you don't have a CDC + Lyme lab.
(3) You've already treated it for the short-term bout the ID docs promote so you're 'cured'
(4) Your titer is on the IgG side. it's a past infection silly (from the hospital's ruthless side).
(5) Your titer is borderline only. Could go either way and oh you can bet the hospital will lean it the way of not having an infection.
These *******s play all the cards the way they want. Posted by painted turtle (Member # 7801) on :
Babesia (and treatment for babesia) is really rough. I remember feeling those same things you are feeling. And it was always a delicate balancing act, listening to my own intuition and the MD's guidance about the meds. We worked together as a team. I knew when my body was saying too much or enough but it was always a difficult choice as to whether to keep going on meds or pulling back before starting again. Mepron/zith/art was very hard.
It's slow going. I did feel like I was going to die.
There are no easy answers, you just have to push through it.
Posted by seibertneurolyme (Member # 6416) on :
Gary,
I know this is not what you want to hear, but the meds you took just stirred up the infections. The only way out is to continue to treat. It sounds like the babesia symptoms are worse than the lyme symptoms so I would try taking just the babesia meds for a while before adding back in the lyme meds.
Soe people are just too sick to treat more than one infection at a time in the beginning.
The off balance feeling of being on a boat is a classic babesia symptom. Hubby used to say it felt like he was walking in waist deep water. And at his worst he could not walk a straight line. He always listed to the left.
A pcp could admit you but that is not likely to happen unless you live in a small town and the ER is tired of seeing you. Hubby's longest admission was in 2007 for 30 days and his pcp at the time gave him his 30 day letter when he was admitted. It was not the first time hubby was fired as a patient.
She did try numerous oral and IV antibiotics for bart during that 30 days but hubby came out worse than when he went in. For 2 weeks they had him on 8 mg of IV ativan daily trying to control the myoclonus and dystonia. And then we wound up in New York with a neurologist who made a bad situation much worse.
So my advice would be to forget the hospital unless your LLMD has admitting privileges. Even a well meaning doc who does not understand these infections won't be able to help.
I really think you are going to have to stick to the babs meds for 4 or 6 months and then move on from there. Realistically after a couple of months you should start seeing some improvements.
This is not medical advice, just my opinion based on hubby's experiences.
Bea Seibert
Posted by massman (Member # 18116) on :
So keep killing the babs thus herxing + feeling like crapola seems to be what everybody is recommending.
Sounds to me like your detoxing organs cant handle what is going on. IME with babs it can be an unhealthy spleen that cannot handle it.
And IMO working to kill the babs with antibiotics does not make sense. Babs is a parasite, not a bacteria.
Posted by canefan17 (Member # 22149) on :
I agree with mass. You're simply not detoxing properly.
I would focus on detox and organs for the next month or 2... heck maybe more.
Posted by sixgoofykids (Member # 11141) on :
I would agree that detox is key to feeling better. BTW, in other posts he has said he was on Mepron for babs.
Posted by lymetwister (Member # 19590) on :
I thought Mepron was an Antiparasitic, not an antibiotic.
Is it possible that I just took too much to quick, killed off too much with YES, poor detoxing and it's the toxins I've been feeling.
The meds are out of me by now. Whatever I'm feeling now thats worse would have to be toxins, right ?
I don't know what stirring up the infection means. Is this really a fact that the buggers are running wild for their lives. So much conjecture with this disease and I think anything is possible.
I'm not as bad this afternoon. Maybe I'm coming down from it all. My doc is aware and I'm holding off on everything until I get back to where I was, then we will start again SLOWLY......
I need to find a way to accept some of these sensations and symptoms. Even one thing out of whack is enough to get me all worked up. I could swear all the crying I've been doing is mostly a symptom. It certainly is not a true depression. That much I do know.
Thanks to everyone once again for your thoughts, prayers, and suggestions.
Gary
Posted by rainbowriver (Member # 24772) on :
you may have bart...
Posted by painted turtle (Member # 7801) on :
Yes Gary, all the crying you've been doing is indeed a symptom.
I am happy to say I don't have that one anymore! But it was awful.
Remember too that babesia is there within you and so it will manifest symptoms. The babesia itself manifests these symptoms. It's not all about detox!
Listen to yourself. You will know when it's best to swallow another spoonful of that stuff.
Posted by springshowers (Member # 19863) on :
Gary. I know you have been working so hard on things for a good long time.
There seems to be a missing key or element to this disease and treatment where some do not get well or respond to treatment etc.
I wish that there were more answers ..
It seems to be a missing piece of the puzzle that many are trying to figure out.
I wish you the best and I Hope you find what works for you.
I tend to agree with the idea that you can not keep treating and treating when it is not working and put yourself through suffering.
There seems to be a divided group on patients and I see those who respond well to treatment and those who do not and can not get through to the "other side"
Whatever that blockage is is what we have to figure out. I wish I had some answers for you.
And for everyone who has this same issue...There seems to be a scramble to figure it out and different ideas. Overall we all know something is not right.. Just can not figure it all out.. Trying this and trying that...
I wish there was a easier way .... or more answers.
HUGS Blessings
Posted by massman (Member # 18116) on :
No its not all about detox...but...you need to be able to detox before you kill.
![[Frown]](frown.gif)
![[bow]](graemlins/bow.gif)
experiencing lots of herxing. ![[cussing]](graemlins/cussing.gif)