I am having trouble breathing, feel very nauseaus, headache and severe night sweats.
I think its too early for a Herx and thats why I think I am having a reaction and I don't know what to do!!!!! My LLMD is very difficult to get ahold of.
Also severe metal taste in my mouth that kept me up all night long..
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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I just called my LLMD and left him a VM, hopefully he will call back... I will not take my doses today and see how I do.
This breathing thing is so stressful and scary and I feel like I am making it worse because I am starting to panic.
Thanks for the advice, I really appreciate it. I looked on the link you left and have EVERYTHING just about... The metal taste in my mouth is almost unbearable!
I feel so lost and frustrated. If I can't take this protocol, then what!
Son's blog born at 24 weeks. Posts: 356 | From massachusetts | Registered: Jan 2009
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kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
The metallic taste is from the Biaxin. It caused me to have insomnia for about a month. It would wake me up in the middle of the night.
I found salty foods would get rid of the taste. But I didn't really want to eat potato chips so I bought Dave's pumpkin seeds. A few of those and the taste would go away for a few hours and I could go back to sleep.
Best, Karen
Posts: 1687 | From Maine | Registered: Jun 2004
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I actually also heard bananas help so at 2 am I was eating bananas and it did seem to help for a few hours, but the taste is just AWFUL!
I have never experienced anything like it before.
I am still having trouble breathing and did not take my morning dose. I am going to take a HOT shower and breath in the steam see if that helps.
I have a pulse Ox machine here so I may check mine and see what it is. I also have oxygen in the house so if I need to I can use it. Its my sons but if I become desperate.
I am now also feeling very lightheaded... Not sure what going on but i'm getting scared.
Son's blog born at 24 weeks. Posts: 356 | From massachusetts | Registered: Jan 2009
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Erika, If I were you, I would just go to the ER. Do you have anyone with you right now? I am starting to worry for you. If it is an allergic reaction, they can help you immediately.
Please keep us updated. Your LLMD may or may not get your message, so please get help.
posted
I am home right now with my 3 kids. My dad is on his way here, should be here soon.
Maybe I will just call me PCP and see what he says. He might be easier to get ahold of. Thanks everyone for the advice, if it doesn't get better soon I will go to the ER.
One more thing, do you guys think it could be anxiety? I am not nervous but my mother in law just keeps saying I am having a panic attack... Never really had one like this before????
Son's blog born at 24 weeks. Posts: 356 | From massachusetts | Registered: Jan 2009
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Sounds like it could be a panic attack, and also could be a herx. It is not too early to start having a die-off reaction from the biaxin and plaquenil. Good that your dad is coming over.
If you think you are having an allergic reaction, you can consider taking an antihistamine like benadryl until you can see a doctor.
Posts: 2557 | From home | Registered: Aug 2006
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
I've had hundreds of panic attacks over the past 12 years I've had Lyme (never had a single one before getting sick). I've never had a headache with a panic attack. One thing is that if you are having trouble breathing with a panic attack, usually it's because your heart rate is high (makes you feel like you can't breathe).
Have you checked your heart rate? Since you have a O2 Ox, check your O2 and write it down. If it's a panic attack, your Oz should be 97-100%, most likely 99-100%. Watch the clock for one minute and record your heart rate. Checking breathing is a little tricky because often you will breathe more often. But you can go ahead and try.
You can then tell your doc what your vitals are when he calls. I would take my temp too, if it's a herx your temp may be elevated (although could be with a rxn too).
My vote is still for the ER. But that's just me!
I am not a doctor, so you cannot take this as medical advice. I am a fellow Lyme Sufferer and try to help others as I have helped myself.
Son's blog born at 24 weeks. Posts: 356 | From massachusetts | Registered: Jan 2009
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Those numbers are excellent.
Your symptoms sound like a herx to me . It's not uncommon to herx a few days after beginning a new medication. Your symptoms all sound like Babs, and Biaxin treats it, so would make sense it was increasing them.
Hang in there. ER's and PCP's are probably no help in this situation.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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posted
Thanks... Does anyone know if depression can be part of this (meaning a Herx) because now I can't stop crying...
For no reason. I don't know what wrong with me but I feel so weak right now, and normally I'm pretty strong and can get through just about anything... I just feel like I want to unzip my skin and get out of it.....
Son's blog born at 24 weeks. Posts: 356 | From massachusetts | Registered: Jan 2009
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Aw Erika,
Sounds like Babesia is affecting you. Too bad your LLMD does not believe in co-infections because you are going to have to address this.
The biaxin works on Babesia to some extent.
As Ocean has said, it is always best to err on the side of safety. Go to the ER if your symptoms are that scary.
Your crying can be a part of a herx as well. Many get emotional, agitated, panic, or anxiety increases with herxes.
It is one heck of a ride treating this stuff.
Your oxygen is at 100% so your body has enough oxygen. Your heart rate is very normal, so I don't believe that you are having panic attack either....usually heart rate will increase a lot with panic and anxiety.
Take care and keep us posted, Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Don't ever feel like a jerk because of the way you feel!!!
Always remember we have all been there and most of us will be there again.
You need to try and relax. and if that dosent work then going to the ER will make you feel better.
Lyme sucks, but don't let it get the best of you!
Take care, Steve
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Oh good Erika,
That makes me feel better. I would say herx based on your vitals. Did you take a temp? I've only had one really bad herx and while my HR wasn't fast, it was just pounding for about 3 days, then it went away. Also, my anxiety increases A LOT when herxing. Also with my period.
As Feel said, yes I feel very emotional when herxing. I will cry sometimes for no reason at all.
Please don't feel stupid!! We have ALL felt bewildered like you do and we are all happy to help. I PROMISE that when I start treatment next month I will be on here begging for help =)
SO glad your O2 is 100%, well done!! I would also say Babs. I hate air hunger, it's the pits.
Son's blog born at 24 weeks. Posts: 356 | From massachusetts | Registered: Jan 2009
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey hey little lady...
Welcome to the world of Lyme! What a rude start for you! I'm so sorry!
Are you settled down any more yet? Feeling better?
I hope so. This can be so frightening.
Because I see complaints from disappointed patients that thought they would be prescribed more meds than they were...
Well, I often tell them that it is a good thing their doctor didn't order a bucket load of meds on the first go around because bad things can happen.
What happened to you is so scary... and exactly why I tell them to not ask for more meds or higher doses until they see what happens.
As you now know the treatment can be nasty, but it is hard to get that across to people who think MORE is always better... until they've been in YOUR shoes.
You are doing a good job educating yourself ... I've been watching. And I am sorry this was your first experience with treating.. and that it got upsetting for you.
But... if experience is what you get when you don't get what you want...
Make it turn around to be a learning experience and please put this nasty experience in your basket of knowledge so you can calm and comfort others.
If you have the opportunity...
Take the phone off the hook, shut your bedroom door and get to a very quiet place. Lay on your back with a WARM- not hot- heating pad on your upper chest. Breath slowly and try to relax your muscles and your mind.
Do not fall asleep with the heating pad on you!!
But if you can manage this... it may help you feel better.
Hope it helps.
And if you get worse.. the next post I want to see is that you went to the ER and you've just gotten back.
Its weird because around 4pm today I felt right back to old me... I can breath again which is nice Its one of thise requirements of life! LOL! I have not taken the meds today until I talk with my LLMD, I think if I know its a Herx I will be able to deal better because I won't be nervous that its an allergic reaction.
My Biaxin is yellow and smells like vanilla.. Strange that it smells so good but can make you feel so bad!
If it weren't for all of you here on LN I would be COMPLETELY lost adn in the dark. Its only from talking with many of you that I know anything about Lyme.
I can't thank you enough for being there for me and listening to me whine! Thank you!
All of this has opened my eyes to what all of you go through and I feel so sorry for all of us!
I had a good cry today and that also made me feel better! But its all of you that are getting me through this and I hope some day to become stronger and be able to help someone else!
Tincup - You know just what to say! Its almost as if you know me. You put things on perspective for me which clearly I need and you always have such kind words. Thank you so much!
Thank you to EVERYONE out there! You should all be proud of yourselves for the differences you make in peoples lives everyday just by your support and knowledge!
Son's blog born at 24 weeks. Posts: 356 | From massachusetts | Registered: Jan 2009
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Don't ever feel stupid around here. We have all been in the same situation. This is the one place you can come and ask anything you need to and no one will think you are being stupid.
Every time I start a new med, it feels like my throat is closing up. Been treating for 9 months. I still don't know if its a herx, a side effect of the med or anxiety. It usually goes away after I take the med for a while, so probably more likely a herx or anxiety.
You can always reduce your dose for a few days, that can be helpful if it is a herx or anxiety.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
You know what I just noticed on my cheat sheet my LLMD gave me.....
It said I could and maybe should take 1 dose per day for the first 3-4 days and work up to 2 doses... HMMMMMMMMMM Could this have been my mistake?
Did I shoot my body into an Insta- Herx?
I think I'll try that... I will hopefully talk to him as well, but I think that may be the answer..... DUH How about READING the instructions first.... I think my Lyme brain isn't that logical anymore!
posted
Oh and Lymestop, I take mine around the same time you do... Just after breakfast and just after supper and like you with in 2 hours I am feeling terrible!
Biaxin 500mg and plaquenil 200 mg twice a day with food. Meds may be taken during the meal or within 1 hour after eating. May start taking one of each med once daily usually at suppertime for a few days before taking the meds twice a day.
Then there is some info about Biaxin causing gas, metal taste etc.. And Plaquenil causing diarrhea.
Thats it. Again I really appreciate you trying to get me through this.
Did you find anything that helped the taste? Last night well this morning I suppose (2am) I was up eating banana's and it did take the taste away for a few hours...
BTW I had worlds BIGGEST pity party for myself today!!!! I have a feeling these are about to get more frequent! :_)
MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
Depression may be biaxin, or babesia iteself. I've had unexplainable crying issues from the disease itself followed by increased crying attacks that seemed to be caused by biaxin.
-------------------- Symptom Free!!! Thank you all!!!!
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I never did find anything to "mask" the taste.
Bananas were a no-no on my diet.
As far as the crying....my neighbor's Mom had this bad.
All day long every day. Until our LLMD put her on cymbalta.
I (think) in her case it was bartonella....
However, I've been known to lose it a time or two treating Lyme and/or babesia.
As my Mom says "The more you cry, the less you have to pee".
This isn't an easy disease to treat.
We've all been there.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
My LLMD has been practicing for a couple of decades, and he believes in pulsing meds. DO NOT push through a herx. Build up slowly to tolerance. A little herxing is okay, but back off the bad ones.
I take activated charcoal pills for the herxing, although my LLMD did mention benadryl, too.
Good luck.
CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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posted
Well I just talked to my LLMD's NP and she says HERX! She says to push through unless unbearable.
I will start with the meds again today but will only take 1 dose per day until say the end of the week and then ruin my weekend by taking the full dose! And see what happens.
Son's blog born at 24 weeks. Posts: 356 | From massachusetts | Registered: Jan 2009
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I had many 'panic attack like episodes' when I first got ill in Sep-07. One sent me to the ER (scariest ever).
Now when I think about it, I couldn't breathe well, but my O2 was always high 98%+, my pulse was not much elevated (under 90), temp normal, BP somewhat up, etc. Were these truly panic attacks or Lyme-induced nightmares? Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I'm going with Lyme induced nightmares, because the NP today said not panic, Herx... Air hunger (babs I think)
Maybe that was the same for you....
The other thing the NP said was "This confirms our diagnosis". I am a huge worrier (SP?) so I'm sure taht isn't helping much!
BTW I took Tincups advice and painted my toe nails. One color though because my 5 year old "lost" the others and it did make me feel better. Prettier in a way eventhough nobody will see them covered in socks and slippers.. (Cold here in Mass)
But it made me feel good none the less.
Thanks!
Have to work in the office tomorrow so I am not starting the meds back up unil tomorrow night.. I can't be sick at work.
Son's blog born at 24 weeks. Posts: 356 | From massachusetts | Registered: Jan 2009
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Hello Erika,
I had a really attack 2 years ago when my throat swelled on the inside and I was having a hard time breathing. I also broke out in a rash all over my body.
I went to the ER and they gave me a shot of benadryl. It started working working right away and it never came back.
The funny thing about it is I wasn't on any meds and I didn't eat anything different that day.
They do sell benadryl that doesn't get you tied, I think.
Take Care, Steve
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
One point about the nasty taste that someone here made- it seems that not all Biaxin is the same. I used the generic kind for a few months and then got some 'brandname' Biaxin XL. The taste was totaly gone with the brandname XL variety. I can't remember if the bad taste had already gone away on it's own by then, but it definitely didn't bother me at all in the last few months that I was on the drug, which was all on the brandname version.
-------------------- Symptom Free!!! Thank you all!!!!
Well I wasn't on yesterday because I had to work. Anyway I did start the meds again yesterday. I took only the 1 dose instead of 2, did pretty well actually.
I will do the exact same thing toay and see how it goes.... Benadryl on hand just incase.
posted
It's so odd that you have those throat symptoms. What does this Lyme do to us??
Like you, I occasionally have serious problems breathing (but when I do something completely relaxing, I forget about it). For me, it's after I take a lot of coconut oil, caprylic acid, or garlic.
After I get these nasty breathing/choking feeling reactions, I stink in the sauna really bad. I'm assuming it's a strong anti-lyme reaction. It's hard to deal with, though. Do I persevere? Or find another method of treatment?
So is it a herx? Or is an allergic reaction? Or both?
That's what I want to know.
Posts: 204 | From Wyoming | Registered: Feb 2003
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
You stink because the Garlic is coming out of your pores...
It's all caused by allicin, a strong antibacterial substance in garlic that is broken down by our bodies to produce hydrogen sulphide, which smells like rotten eggs and is used to make stink-bombs.
How about that!!!!!!!
Steve
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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Dawnee
Unregistered
posted
I have no idea, and have not read the responses. But did want to point out that it's never too early for a herx. My daughter and I both herxed within hours of our first dose of abx.
But trouble breathing.. if I am not mistaken, is a big sign of allergic reaction.
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Dawnee
Unregistered
posted
I have no idea, and have not read the responses. But did want to point out that it's never too early for a herx. My daughter and I both herxed within hours of our first dose of abx.
But trouble breathing.. if I am not mistaken, is a big sign of allergic reaction.
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