I did not come out of the herxheimer reaction, as expected, so my Dr. took me off the antibiotics. I still did not come out of the herxheimer reaction (or cytokline storm, or whatever it is), so after a week and a half of no meds, she put me on something to calm down my auto-immune system. That helped, and I am still on that, still not "recovered" from this herx, but at least I can sit up.
Now, today I got very sick again suddenly. I felt it coming on... I felt my mind slipping away, and I gradually started shaking more and more. I think I almost passed out, I couldn't respond to people or speak correctly. (I think this is somewhat how a stroke patient feels.) I came up to lay in bed to see if it improves, but my lyme Dr. said to go to the ER if it gets and worse than it was the last time I talked to her. (It is, but I want to give it at least a chance to go away.)
So, anyway, now that I'm laying in bed very still, I'm not shaking like I'm having a seizure, but I am still very sick. (I also have a fever, 100.1, which is a first for me with this. I assume it is from the lyme/herx getting worse like it just did.)
When do all of your Dr's tell you to go to the ER? My Dr. said they could monitor my systems to make sure everything is okay. Of course they can't do anything for the lyme.
The lyme disease I have is pretty bad, and we haven't even gotten past the tip of the iceburg with treatment. I do wonder if it could kill me, with how much it affects my brain.
Help?
Thanks.
Posted by lax mom (Member # 38743) on :
Not everything is a herx. I thought I was having a herx a month ago and it was a blood infection.
Posted by Winni (Member # 36772) on :
Lax mom, what kind of an infection did you have? And what were your symptoms? I am having some strange things happen and I cannot really find anyone else who is going through this? Do you mind sharing? You can PM me if you like. Thanks.
Posted by dbpei (Member # 33574) on :
Mama2six, do you have anyone there that can be with you? I hope there is a friend or family member who can be with you while you are in this state.
Anti-inflammatories, such as curcumin, fish oil, ecklonia kava will help to reduce some of your brain inflammation. Magnesium will help as well.
Have you tried lithium orotate? It is neuro-protective and small doses will also help to stabilize your mood, if you are feeling anxious or depressed.
I wish there was more I could offer. I have suffered a lot of auditory problems and neuro symptoms with this illness as well. These symptoms can be very frightening. Please take care and keep us posted on how you are doing.
Posted by lax mom (Member # 38743) on :
Wouldn't a herx/flare get better when she stopped the antibiotics? and she'd be left with her original Lyme symptoms?
Mama2six: I hope your Dr either saw you or ran labs before chalking it up to an auto-immune response.
If your Dr said "go to the ER if things get worse" and you say they are worse...I hope you are in the ER. She didn't say "If they get worse, wait and give it a chance to get better".
Posted by seibertneurolyme (Member # 6416) on :
It is not common but lyme disease can actually cause strokes. So if you have symptoms such as slurred speech that come on suddenly I would NOT just "wait and see".
You of course know your body best, but if your LLMD says go the ER then I would go.
I would ask your doc to test you for hypercoagulation or try taking enzymes such as lubrokinase and/or wobenzyme.
Any infection and especially tickborne infections can cause clotting issues which although not severe enough to actually cause a stroke in most people can cause lots of weird symptoms.
Please post an update and let us know how you are doing.
Bea Seibert
Posted by Catgirl (Member # 31149) on :
You might want to go to the ER just to rule a few things out.
Posted by seibertneurolyme (Member # 6416) on :
Ok -- I looked up the med you said you are taking. Donnatal -- it is a combination of belladonna alkaloids and phenobarbital. I really hope you are on a low dose as this is not a med I would really want to be taking for any length of time as it can become habit forming.
Also I think it is possible that the fever could be a drug side effect if you were dehydrated.
As with many meds it can cause dizziness -- but I really hope you are not taking dramamine or there were a couple of other dizziness meds listed that could cause interactions.
Just go to drugs.com and type in the med name for more info.
Bea Seibert
Posted by Mama2six (Member # 38069) on :
Hi,
I'm still here.
The thing is, whenever I lay really still in a quiet place, I improve, at least somewhat. My thought when my Dr. said to go to the ER if it gets any worse, was that meant if it doesn't get better with laying still then I should go. I didn't expect to actually FEEL WORSE than ever before... but this was the first time I ever thought I might be passing out.
Now I'm just taking it easy, laying back, not walking around much at all.
I wish I knew what was going on, but I am going to call my Dr tomorrow and see what she has to say. It is really bothing me that NONE of the detox things have helped, and it has been over 6 weeks since I started the meds. I fear that the disease is just worse, and what I need most of all is not detoxing but getting rid of the disease itself... But I don't understand it enough to know.
Posted by Mama2six (Member # 38069) on :
Also, my Dr. didn't see me, because I was too sick to drive. (I still am. I can't drive when looking left and right causes me to loose track of where I am in time and space.)
I had no idea there were anti-inflamitory things for the brain, so thank you very much for that tidbit of information. (I am very new to the lyme diagnosis, not new to being horribly sick for a long time.)
I don't take any meds for the dizziness, because nothing I have taken helps. (Reducing noise, and laying still help.)
Slurred speech is one of my "normal" symptoms, but I went from feeling not good (how I always feel) to feeling like I was going to pass out in probably about 15 minutes.
Oh, and my symptoms were pretty bad when she said "if they get any worse"... I was shaking with a seizure-type of shaking, and my words were coming out all chopped up... like every word in a sentence.
This disease is an awful thing.
Posted by Lymetoo (Member # 743) on :
GO NOW!!!
Posted by Mama2six (Member # 38069) on :
I have improved.
Posted by Carol in PA (Member # 5338) on :
If you have an elevated temperature, be sure to drink plenty of fluids. This will help to reduce a fever.
There are a number of things you can take to reduce inflammation, which will help both the body and the brain.
systemic enzymes magnesium fish oil acetyl-l carnitine alpha lipoic acid mangosteen juice, or extract
There are more, but I'm having brain freeze. Posted by lax mom (Member # 38743) on :
Mama2six: this is an example of pushing through when you needed to be in the ER. We can do major damage by pushing through when our bodies are screaming for us to get some help.
Posted by Mama2six (Member # 38069) on :
Well, the whole "when to go to the ER" is a very fuzzy line. For moments (when I felt like I might pass out) I felt worse, but that immediately went away when I laid down.
Anyway, I talked to my Dr. today, who wants me to go to an alternative Dr. to help me to detox. She did not say "I needed to be in the ER". She did tell me that she felt this had the potential to be life threatening, though she thought that was low, since I've been off the antibiotics for quite some time. (Though I'm not convinced I've detoxed at all.) She feels very sure, especially since I responded to the donnatal, that this is the reaction to all of the lyme die-off from the antibiotics I was on.
Posted by Mama2six (Member # 38069) on :
The rest of the symptoms (aside from the brief feeling of thinking I might pass out) have been here all along, on and off. (Solidly "on" though since starting the antibiotics, with only a bit of relief, finally from the donnatyl, which relief seems to be gone now.)
I am just very, very sick with this.
Posted by canadianmama (Member # 36298) on :
I'm so sorry you are feeling so poorly mama2six! Sending you healing energy.
I'm curious if anyone knows what kind of help can be received in the ER?
My experience of taking my son there was that it made him worse -noise, rough doctors, no testing of any kind, tons of stress, being treated like crazy people for mentioning lyme, being given steroids...
What can be done in the E.R. for intense lyme symptoms?
I'd really like to know so I can try to judge if there is a point to going there
Posted by Mama2six (Member # 38069) on :
The Dr said that they can monitor my systems to make sure I am "ok". (I think she means, as in, not going to die, heart not failing, etc.)
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