LymeNet Flash: does anyone get sick in this way?

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Posted by Michael_Venice (Member # 17254) on :

Hi.

I'm wondering if any others have the experience of just getting walloped by a bunch of symptoms at once, getting viciously sick.

This happens to me sometimes, and scares me a lot.

I will start feeling 'bad', and go really downhill. Heart palps, tachycardia, very dizzy, disoriented, very very weak, shaky, sweats, feet go ice cold, often stomach pain and other issues.

I've had this all along, in 'episodes' for a long time. I started Mepron a few weeks ago, and have had some very rough days--at the very least, it's giving me major GI issues. Very slowly, it seems to be a bit better, but not tonight. I am seeing an LLMD.

Anyway, I just wonder if others have this episodic kind of thing. These have been the times I've gone to the ER--and of course, was just always sent home after, with no real.....anything.

20 years ago, I had a couple of knee surgeries. After the surgery, I threw a blood clot in my lung. It was fairly serious.

That was NOTHING compared to how I feel when these episodes now happen. It's so hard to know what to think or do. It's like, I feel so bad that every normal alarm bell is going off, but I think..."this has happened before, and I got through it".

In the meantime, though, I feel like I'm dying. My heart's checked out okay, even if it goes bananas. I have had (recently) a full cardio workup. When this is happening, though, I mean....it feels like my whole system is shutting down.

I mean, I've felt pretty rotten most days, with a lot of these symptoms. But I just have times where it seems like I get hit SO hard, it's a violent kind of sick.

Can anyone relate to this?

[ 11. November 2008, 08:27 PM: Message edited by: Michael_Venice ]

Posted by bettyg (Member # 6147) on :

michael, [group hug]

i've not encountered what you have. not been on meds you are on either.

you're suffering from HERXES! but many times it's more than that too.

have you ever gone to a LYME/HEART llmd ??

up for those experiencing heart problems to relate their experiences to you...

Posted by Peedie (Member # 15355) on :

Well ....you know many of us have taken turns here posting about the heart symptoms. This is the most terrifying event in our symptoms I think.
"In the meantime, though, I feel like I'm dying. My heart's checked out okay, even if it goes bananas. When this is happening, though, I mean....it feels like my whole system is shutting down."
It does feel like it could kill you.
You should get checked out by a Cardiologist though. Ask your LLMD to recommend one so you will be seen by someone who understands Lyme. There are heart related conditions that can be dangerous and need to be treated differently.
Did the people in the ER tell you that you don't have Lyme? Happened to us. Was told by the ER doctor my daughter doesn't have Lyme and that anybody can "hang out a shingle and treat Lyme" but that they are only taking our money. He suggested we see a ID doctor.
I find it very discouraging every time I come across an MD with this firm commitment to wrong information.
Remember you are the one who has to look after your health and treatment progress. So if you think something is not right - take a proactive stance and look further. Learn as much as you can and get help where you can find it.
Good Luck and Best Wishes that you will feel better soon.
-p

Posted by feelfit (Member # 12770) on :

Hey Michael,

Well, I'll tell you this. I just came out of a 3 day span of what you describe and I know it was a herx. That is probably what you are experiencing too.

I made the comment the other day that what I expereince on a daily basis would send "normal" people to the ER. THat is how seriously ill I feel.

Even on non herx days it is horrible....but herxing is tough.

you have done the right things by having a full cardio work-up and seeing a LLMD. Most of the time folks come out with a clean cardio work-up.

This is what makes things so tough. Keep your chin up and bulldoze through. If you are feeling really death like visit the ER or call your doc.

Best,
Feelfit

Posted by Michael_Venice (Member # 17254) on :

Thanks all.

I feel like I was going into shock or something. I don't know WHAT it is. , just terrifying.

I start wondering, "could it possibly be lyme and babesia that has done this to me?"

Again, I've had 'episodes' like this prior to Mepron/azith, but that seems to have added to the severe stomach issues, and contributed to the dehydration.

I still feel very shaky and weak. Having stomach issues today still, and trying to stay hydrated.

My doc told me to lay off the medicine until I see him (supposed to go tomorrow).

Posted by lymeinhell (Member # 4622) on :

Just wondering - does this type of stuff hit right after dinner time?

I used to fear 7pm early on in treatment, because I would manage to go to work, but I'd come home, have dinner, and then it would start...

First the stuffy clogged nose, then the dizzies, then my stomach would erupt, I'd get hot/cold/sweaty, palpitations, and incredible fatigue. Then the migraines or panic attacks would kick in and I just would head under the covers in the dark. It was pretty predictable....

A lot of this was yeast, I've now come to realize. 2 months of Diflucan pretty much crushed this fun cycle.

Not sure if this helps.

Posted by Michael_Venice (Member # 17254) on :

the 'episodes' that get so severe do OFTEN happen after I eat.

Before my lyme diagnosis, I stopped dairy, virtually all sugar, and most carbs.

Months ago, I was tested for some kind of idiopathic allergic response, but it came back okay

Posted by Al (Member # 9420) on :

Look up (NMH) here in the search bar (LYMENET)
I've had this for 6 years house bound for 2.
I have lots of info as I've been to the ER several times, 2 Cardiologists, 2 E.N.T.s
Endocrinologist, Electro physiologist, and others

I would suggest you have a Tilt Table Test ASP.
Also test for,
Rennin
Aldosterone
Cortisol
Citrate

PM welcome

Posted by Pammy (Member # 15695) on :

Michael,
I get that too. Usually it feels like my digestive system starts getting wacked out.

Then, the same cascade of symptoms you just mentioned happens.

I get really cold/chills but I can be sweating. Weak, weak heart etc. Feel like I'm going to die.

I have to lay down (not completely flat) with a really warm blanket and watch tv to get my mind off of it.

A friend of mine has Crohns and the same thing happens to her.

I wonder if its related to the digestive system somehow. Our digestive syst has so many nerves in it...it could easily trigger a response throughout
the rest of the body.

Hope they lighten up for you.

Posted by tickssuck (Member # 15388) on :

Hi Michael,

"I will start feeling 'bad', and go really downhill. Heart palps, tachycardia, very dizzy, disoriented, very very weak, shaky, sweats, feet go ice cold, often stomach pain and other issues."

"Anyway, I just wonder if others have this episodic kind of thing."

Yes, I do! Ditto...for me, minus the stomach issues so much...also add lots of numbness/tingling, twitching....hmmmm, I'm sure there's more. Mine feels very neurologically induced, not really digestive in any way. All thanks to, I believe, Lyme and company (I have ALL coinfections). Nasty stuff.

I have, many times, believed this crap is about to kill me - I'm sure this is true for most of us. I too often have to psych myself out that I've been through this before; I'll probably get through it again this time.

Here's to all of us on the slow, persistent climb to feeling better. I (we) have to believe this will happen. I sincerely hope you start feeling better soon. Kind regards. TS

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