Topic: I'm scared and I don't know what's going to happen to me.
Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Soooo...
Just about to go pickup my oral abx regimen as prescribed by my LLMD.
I couldn't sleep all night thinking about this. I have maybe read too much about Lyme disease because all I've read is how much *worse* it gets before there is any inkling or possibility that anything could get better.
If it ever does get better.
I don't know what's going to happen to me. I was thinking I probably need pain management. I haven't had a lot of pain so far but it's coming on and I don't know what symptoms are coming up.
I don't like any of the pharmaceutical options and I'm not even sure they'll work so I'm thinking Zyflamend? The curcumin stuff? And I have a mini-truck's worth of epsom salts here.
This isn't how it's supposed to be. There's supposed to be a Door Number 2.
Posts: 2057 | From Florida | Registered: Feb 2015
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Your experience is not a combination of all the bad things that have happened and could happened to anyone else!
Your experience is yours alone. Yes, you can prepare, have on hand what you may need to relieve symptoms. Doing so should help ease your mind.
In my experience, herxes are more flu like in feeling. I also get super emotional. It only lasts a couple days. THEN, I usually see improvement in my symptoms (like significant reduction in pain, headache gone, etc...).
Sometime, I don't have a strong herx. But I get a great improvement in symptoms with a medication change.
Start with one new medication at a time. Take it for a couple days until you see if you herx and also see what kind of improvements you start to get with it. Once you get to that point you can try one more medicine, and so on.
It will be OK
Posts: 5237 | From here | Registered: Nov 2007
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Jordana
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Member # 45305
posted
"Your experience is not a combination of all the bad things that have happened and could happened to anyone else!"
Oh, good point... .
Thank you sammy.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
You can take control by going slow and only doing small amounts of anything to see how you do. We're all unique in how we respond.
Honestly, I respond both well or badly to what I try. So my plan is always to find out which one it is!
If it's going well, that's great - means I've found something that will work for me, like an easing of symptoms.
And that possibility is also out there for us, too, not just a scary reaction. For example, turmeric is great for taking down pain, and I don't think it has any bad side effects.
Sometimes it's neutral - can't tell. But at least it's not hurting.
And then there's challenging responses. My goal is always to minimize those as much as possible. You may need to stop taking something, or have a discussion about how to minimize challenging effects.
Also to have some tools on hand, like you mentioned pain med. I had that throughout, actually long before I found out I had Lyme.
I think detoxing will be an important part of this, and there are lots of detox threads here you could read through as well.
Posts: 13116 | From San Francisco | Registered: May 2006
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MannaMe
Frequent Contributor (1K+ posts)
Member # 33330
posted
Start out slow, with a low dose and build up to the amount you are to take.
Only start one med at a time. Then you'll know how you handle one before adding another.
Posts: 2252 | From USA | Registered: Aug 2011
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
You are obviously having a very hard time and it's not your fault. It's not uncommon.
I suggest you tell your LLMD how much this is affecting you emotionally. It can be a big part of the treatment, and he/she can't take it into account unless you tell them.
Posts: 1737 | From Virginia | Registered: Aug 2011
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Well, he knows.
I don't think there's anything anyone can do really. Except help me treat it.
Posts: 2057 | From Florida | Registered: Feb 2015
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I think I am a rare breed..... I tend to jump in ....to fly by the seat of my pants as it were. I WANTED the "worse" because I knew it meant I would get better. just knew that was what I needed. I was close to death as it was anyway so it didn't matter to me one way or the other how much worse I got at the time.
I was ready for war. I did the right thing fo rme. it had to be done. I had no other choice that I could see. I am so much better now. a new person. it was a bumpy road and a lot of trial and error. in the end it made me stronger and I don't think I would have changed anything really. but like I said, I am probably rare. pain doesn't scare me very much at all.
hang in there, whichever way you find helps you it is worth it for sure to just keep going and never give up!!!
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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Jordana
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Member # 45305
posted
I think I'm just still in shock.
I wake up thinking REALLY??? THIS????
Effing "Buyers Club" of the millennia?
REALLY???????
@^#!$@##&%$!#@%#!
Gotta say here that I am not an outdoors kind of person. Don't ride horses. Hate camping. I don't own a bicycle.I used to walk and do Pilates and sometimes Yoga for exercise --- INSIDE. I am horribly lazy and would have considered *mall walking* for exercise IF THE MALL WASN'T SO FAR TO DRIVE.
The bite I got doesn't even - according to their reckoning- even HAVE Ixode Scapularis as a possible vector. And here are all these people tralalalaing around there with NO LYME and they don't even BELIEVE I have this @^$%^&$%# thing.
So much for epidemiology. I'm the last person on earth who should have gotten Lyme, and I got it. I keep going back to the Bite and all the people who told me there was no such thing where we lived. I was on my PATIO drinking a MILLER LITE when this happened.
I don't rock climb. I don't ski. I like swimming, there are no ticks in the swimming pool. Now I have an immensely complex chronic illness. I mean it's just...well, you'll excuse my outbursts I hope.
I feel like I got hit by the Smite button. I'm scared but I am also MAD about this.
btw..day 2 of mino 50mgs is going ok. No herxing, but I get hit by a nap attack in the afternoon.
Posts: 2057 | From Florida | Registered: Feb 2015
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
yes, "mad" is a big part of this for me too.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
A herx is often nothing more than an afternoon nap attack. I remember it well.
Posts: 9931 | From Maryland | Registered: Dec 2007
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TNT
Frequent Contributor (1K+ posts)
Member # 42349
posted
The absolute BEST sign that I'm herxing is unusual tiredness, and usually a strong need to lay down and nap such that I cannot resist it. When I get that, it's "BINGO!"
Posts: 1308 | From Eastern USA | Registered: Oct 2013
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
. Oh, good to know, thank you.
Posts: 2057 | From Florida | Registered: Feb 2015
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
that may be so for some, but my herxing was not a nap! far from it.
so to each his own.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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